

Walking

Through Cornflakes

Kay Schofield

Copyright 2013 Kay Schofield

Published on Smashwords

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Foreword

Having lost my daughter Helen four years ago, I reflect on the various chapters of her life. I recall when Helen was born and my emotions after I was told she had developmental difficulties. She grew up so quickly, attending what were then called "special schools". My husband Mike and I did not always see eye to eye when it came to Helen, but we did watch her strive to gain her independence. How proud we felt when Helen moved into a flat, where she was able to live her life as she wished with a degree of support. I was ecstatic when she achieved her ultimate goal, her own little house.

In the context of Helen's achievements, we arrive at the final chapter of her life and her death – the problems with the GPs, not least their woeful lack of knowledge, which is utterly unforgivable given how we entrust medical professionals with our loved ones' lives. Then we come to the problems with the Primary Care Trust (PCT) and the General Medical Council (GMC), both of which simply passed the buck with little thought for our family. And finally the ombudsman's cruel final verdict: no further investigation. We have nowhere else to go.

My frustration and anger at the PCT and the GMC were dwarfed by my feelings towards the two GPs involved. The first GP showed little care and compassion during Helen's initial appointment, yet worse were the devastating consequences of the GP's ill-advised prescription. The second GP told a version of events at the inquest. I cannot disprove his version, but he and I both know in our hearts what happened on his visit, just days before Helen died.

Writing this book has been therapeutic for me, giving me the time and space to remember Helli, my beautiful and special daughter. Yet this book has a wider purpose, that is to encourage greater awareness of the mistakes medical professionals can and do make, and to show how the fight to secure justice for our nearest and dearest may ultimately be futile.

I couldn't have written this book without the help of my lovely, caring friends. I would particularly like to thank: David, for unravelling my erratic handwriting, spending hours supporting me by attending meetings and writing countless letters. Ellen, David's wife, my true friend who has always been my rock in tumultuous times and who I love dearly. My lovely friend Sheila, who has provided endless support to both myself and my family and encouragement throughout the sometimes difficult process of writing. And finally to Sheila's son Rob, who has turned my words into this book and made it possible for you to read our story. I simply cannot thank you all enough. I am truly blessed.

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Chapter One

"Come on Helli, time to get up – its 8.00am – we will have to be out by 9:00."

"Coming", said a half-asleep Helen.

I carried on doing the usual early morning tasks, popping in and out of Helen's bedroom. I asked her if she was OK. Helen had had a terrible cough and had been staying with me for the past week, but today was going to be an exciting, brilliant day.

We were going with Helen's Nana (who lives with me) to meet up with Catherine, my eldest daughter, at a little house just up the road from me – a house that was to become Helen's new home. After living in a little flat for the past few years, Helen was finally in a position to rent and then eventually buy this little house. We were about to meet the Estate Agent and pay the deposit.

"Helli, are you up yet?"

"My leg is hurting a bit" she said. I gave it a bit of a rub and said: "OK we will get a taxi up the road". Nothing was going to spoil this morning as she had felt so rotten with the cough that I wasn't going to rush her.

By now it was about 9.15am. Nothing could prepare me for what was about to happen in the next couple of hours.

The taxi driver gave a surprised look when we stopped just up the road, probably thinking: "what a lazy lot, getting a cab for such a short ride". I didn't care. We got out and made our way to the house. Catherine joined us, having taken her daughters. Hannah and Molly, to school and so we waited at the 'new' house for the Estate Agent to arrive.

It was freezing cold, but Helen's face was glowing.

The Estate Agent arrived, apologising for being late, unlocked the door and in we all trooped. The house was a small two bedroomed semi in a quiet little road of similar houses, built sometime in the 1970s.

The house had a small kitchen / dining area and a lounge overlooking the lane. Helen was impressed by the back garden, where she could sit out and was already planning barbecues. Her Nana and Catherine were also thrilled. "Ooh", said Catherine, "You could put a sofa there and a coffee table there, a music system there and your millions of Boyzone and Westlife CD's could be shown off there! Oh and Helli, you must have a dishwasher."

Helen and I completed the business with the Estate Agent and we all left the house. Nana was going home and Catherine was meeting a friend for coffee at the nearby precinct. Helen and I decided to do an errand for her Nana and then continue to the Doctor, where Helen had an appointment at 10.30am.

As we left the house, two ladies came out from their houses. One was Sheila, a lovely woman who I already knew, and who knew about Helen wanting the house. She looked enquiringly at us, smiling. I said: "She's got it!" Sheila was thrilled and introduced us to the lady by her side. "Helen", she said, "we will be your neighbours and anything you need, call on us". Helen smiled shyly and I thought everything was falling into place for her. I remember thinking I would never forget this morning – I never have.

Helen had been born with learning difficulties and had fought to overcome so much in her 33 years. Stuff that many young people take for granted had been so hard for her. But yet, here we were!

As we walked towards the precinct Helen said: "Mum, I feel I'm going to faint". Panic grabbed me as I tried to guide her towards a nearby bench, but she was falling. I grabbed at her, lowering her to the ground. People started gathering around us and I remember asking someone to go and get Catherine from the coffee shop. An off-duty policeman and an off-duty male nurse appeared, both asking questions. The next thing, a paramedic appeared and after asking further questions, he radioed for assistance. I was kneeling by Helen, talking to her and stroking her face. By now another paramedic had arrived and Helen was placed in a chair. The ambulance was parked at the back of the nearby shops and so Catherine and I followed the paramedics. I got into the ambulance with Helen, who had come round for a few seconds, before she lapsed into unconsciousness again. We agreed that Catherine would go back to my house to tell her Nana what had happened and then Catherine would meet me at the hospital.

In the ambulance, Helen was laid down. The paramedic had her attached to monitors and was talking to the driver about a police escort and using the blue light. I remember at that point feeling calm, talking to Helen about the house and telling her she would be alright, as though I couldn't, or refused to, think otherwise, like all this wasn't really happening.

The paramedic explained that when we got to the hospital I had to get out of the ambulance immediately and someone would take me to a separate room as Helen was very poorly and they wanted her to be seen to as soon as possible. I said I wanted to stay with Helen but as reality was setting in with me, I realised that I couldn't hinder things. When we got to the hospital, I remember a nurse coming to me and telling me how poorly Helen was and then Catherine arrived. I told Catherine what the nurse had said and she was quite cross that they had worried me so much, as she herself had had a funny 'do' and fainted recently and had also been taken to hospital. Thank God that was because of a virus she had contracted, but nevertheless it had been worrying.

The nurse then came back to us and took us into the room where doctors and nurses were working on Helen. A doctor took us aside and said they had worked on Helen for enough time but had not been able to save her. He said he was very sorry.

I looked at my daughter and couldn't believe that she was gone from me. Helli wouldn't leave me – we were one. Helli's dreams were my dreams. I was her protector. In those minutes alongside my beloved daughter a huge part of me died and went with her. The umbilical cord was finally severed and what would we both do without each other? I would question this over and over again.

I leaned over, my arms covering Helen. I stroked her hair and kissed her still face, whispering my love for her. Then, I had to say: "Goodbye Helli".

We were asked if we wanted a minister to pray with us. I nodded 'yes'. I had not been a churchgoer for years, but God was very important to me. I told God everything, asked him for help and thanked him for the good things in my life. The minister prayed with Catherine and me for Helen's life and death.

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Chapter Two

We gathered Helen's possessions together and left the room. A nurse gave me details of when I could return to be with Helen in the Chapel of Rest, which was to be the next day, Saturday. Somehow we got across the road to where Catherine's friend, Lisa, was waiting for us in her car. We now had to go home and break the unbelievable news to my Mum.

Mum, Catherine and I just sat crying, unable to fully comprehend what had happened in just a few short hours.

Then I had to make the telephone calls to relatives and friends. My first words to them were: "I have some terrible news, please sit down". They thought I was ringing to say that Mum had passed away. Mum was then 87 and in good health but when I had to tell them it was Helli, we were all sobbing and the more calls I made the more the reality of what had happened was hitting me. I couldn't bear the thought of having left Helen at the hospital and I clung to the thought of seeing her the next day in the Chapel of Rest.

The questions on everyones lips were, of course, "why", "how" and "what was the matter with Helen" and I couldn't answer them, because I didn't know. My friends and family were wonderful and there every step of the way, offering whatever help was needed, lifts to the hospital, making phone calls for me and calling to check that we were alright, as they knew we were exhausted.

The next morning, Saturday, I phoned the hospital at the advised time. I made arrangements with the porter who would meet us and then phoned the ward to confirm with the nurse I had spoken to on Friday about who was to accompany us to the mortuary and the Chapel of Rest.

What happened next was unbelievably cruel. The nurse who had given all the details the previous day was not available and I had to speak to the Ward Sister, who flatly refused to send a nurse with us. She told me that the weekend visiting policy had changed, I should have been told that I would not be able to see Helen until Monday!

I was totally devastated. My daughter had been taken from me, with no reason or warning. Every fibre of my body longed to see her, to kiss her, to talk to her, to be with Helli again but this callous unfeeling woman would not change her mind and refused to make any arrangements for me to see Helen before Monday.

I found out later that it was actually her who was not up to date with hospital policy. The policy had been changed to acknowledge that at weekends such "visiting" must be possible.

How I got through that weekend I honestly do not know. One of my closest friends, Ellen, was in Australia and her daughter Nicola had contacted her to tell her what had happened. Ellen contacted me on the Sunday and we talked and cried together. Ellen and her husband, David, wanted to cut short their trip and come home but couldn't change their flight tickets. They were in constant touch with me, however. David sent me a beautiful letter, relating to his personal feelings of the loss of a loved one.

Another close friend, Sheila, came to pick me up on the Monday and took me to the hospital. I think it was also on that Monday visit to the hospital that a policeman contacted me to ask questions and take a statement from me about what had happened on the Friday and he also had to accompany me to see Helen to formally identify her.

When those formalities were done, I was left alone with Helen. I talked to her and told her how I felt. I wanted to take her home so badly. She looked as if she was asleep and I couldn't comprehend that she wouldn't wake up.

We were then told that Helen would be going to another hospital for a post mortem as her death had been so sudden. The other hospital was on a new site in Manchester, which was amalgamating all the local larger hospitals into one huge complex, a massive undertaking. I was given all the details of when Helli would be going to the other hospital and made the necessary arrangements to visit her, determined that I would not miss a day of being with her.

We arrived at the hospital and found our route took us through an awfully gloomy make-shift corridor to get to the mortuary. The journey was agony – it felt like we were walking to hell.

Again I talked to Helen, all the time sensing that her spirit was with me and initially feeling peaceful, but then reality took over – she was not going to wake and I experienced again the terrible sense of loss.

I was told that the post mortem would be carried out the following day and I agreed a time when I could visit her after the procedure. I had to keep telling myself that Helen was now in Heaven. I could not bear to go too deep into the detail of the post mortem procedure, but, I needed to know what had happened that Friday morning.

What had taken Helen's life? Well, what had taken her life was not an aneurysm or a heart attack but a doctors prescription. A prescription for Dianette, given to Helen just three short months earlier by a doctor seeing her for the first and only time. A massive DVT, attributable to the medication prescribed by that doctor, had killed Helen.

We had talked to the local undertaker, just along the road from where we lived, about arrangements for Helen's funeral. I had to find out from the hospital when they would release Helen's body so that our undertaker could collect her and take her to their Chapel of Rest. During this time, thanks to Sheila and Ellen's daughter Nicola, I had not missed a day visiting Helen and talking to her. I explained to Helen what was happening. She would soon be home with us in Prestwich.

After completing the arrangements with the hospital, the undertakers then contacted us to confirm when Helen would be brought by them to rest in their Chapel. I had ready the clothes that Catherine and I wanted to dress her in. I was going to see Helli back in Prestwich at last and I felt more peace than I felt when she had been alone in the hospitals. I phoned them at the time they had said she would be home.

Even these arrangements were to cut me in two. I phoned the undertakers to be told that Helen was not there – they had 'lost' her! I was nearly hysterical, frantically phoning around both hospitals. The undertakers then confirmed that they were collecting her and apologised but told me I could not now see Helen until the following day. The woman from the undertakers, although apologising, was also very matter of fact and showed no feeling or sympathy towards me whatsoever. I was beside myself with grief. I was going to have to spend the rest of my life without Helen and this incompetence by the undertakers had taken away precious time I could have spent with her.

The next day Catherine and I walked up the lane to the undertakers carrying all the bags containing Helen's favourite clothes, jewellery, make up and her cuddly dog, Tommy. She had named him Tommy when she first started talking as a small child.

We also had photographs of us all together in happier days and letters, written through tears, mine expressing my love and pride in her but also not feeling worthy of the absolute and unconditional love and trust she showed me in all her 33 years. I felt a failure as I had been with her when that doctor had given her the prescription for Dianette.

Helen looked beautiful. The funeral was arranged for a few days later. By now, Helen's face was showing signs of bruising, which is a condition that can happen when death has occurred some time previously. I couldn't bear to think she was going to look 'hurt', so as much as I dreaded the funeral, knowing it would be final and I would never again be able to touch her and kiss her, I had to let it be soon.

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Chapter Three

Nicola (daughter of my friends Ellen and David) and my daughter Catherine were wonderful during this time. They took over the task of arranging all the details of the funeral, consulted me at every stage, designed and printed the most beautiful order of service cards and helped me with the choice of hymns. Together we selected a poem to be included in the service, entitled: When tomorrow starts without me.

We had attended the funeral of a special friend, Margaret, a couple of years earlier and remembered that her family had pictures of various stages of Margaret's life projected onto a screen during the service and after speaking to them, we decided to do the same for Helen.

Nicola and Catherine prepared a selection of pictures of Helen, when she was a baby, a toddler, a Brownie, a picture of a beautiful makeover she had had done when she was about 24, a picture of her when she was Catherine's bridesmaid and many more of special moments in her and our life and these were projected onto a screen during the service. They also recorded a selection of Helen's favourite Westlife songs and arranged for them to be played as the pictures were shown.

Rather than have the service in the local Church of England church, we decided to ask the local Methodist minister if it could be held in his church. It is a very modern building, light and airy with white walls and beautiful stained glass windows. To me it represented youth and was much more appropriate than the older, darker, Church of England church.

The Methodist minister was lovely to us and readily agreed to our request that a second minister, who was a friend of Sheila's from her local church, share in the service. When asked about the picture projection and songs he was wonderful, providing all the help and co-operation we needed. Nicola spent hours getting the sound track synchronised with the pictures.

Whilst all these arrangements were being discussed and finalised, Catherine and I went to see Helen on the second day she had been at the undertakers. To our horror, we found that she was not in the Chapel but in a bare untidy room with no flowers, nothing. We thought perhaps she was only there temporarily, because someone else was in the chapel that day. When we enquired about this, we met the same woman who had been so indifferent when they had earlier 'lost' Helen. She seemed quite surprised when we asked why Helen was not in the Chapel, saying "Oh Yes, I can put her in there, if thats what you want?" I could have screamed at her for her complete lack of sympathy and understanding. I formed the impression that she had been doing her job for too long and seemed to regard people's loved ones as pieces of furniture which could be moved around as and when necessary. Catherine and I were so upset but I doubt if this woman even noticed.

When we got home from the undertakers, the house was full of visitors. People were calling in at the house at all times and the telephone was ringing constantly. Everyone who contacted us was devastated by Helen's death and wanted details of Helen's funeral so that they could attend. Each person who spoke to us of knowing Helli had their own memories of her but very many had one memory in common and that was Helen's smile. She had a beautiful smile which lit up her face. On hearing all these comments, I was so proud, humble and sad.

The day of the funeral was almost with us and then – another huge mistake by the undertakers! They had put the wrong date in the local papers. People were again having to contact us, by telephone or in person, to clarify the details they had been given previously. I was livid. Where was the respect from the undertakers that Helen deserved? By now, I was worn out, both mentally and physically.

Catherine and Nicola helped me choose a beautiful venue for the wake and finally the day of the funeral arrived. The car brought Helen home for the last time. It was surreal. I had gone through this just five years earlier for my husband, Mike.

The house eventually emptied as relatives and friends left to make their way to the church, leaving just myself, Nana, Catherine and my granddaughters Hannah and Molly. The church was on the main road and when we arrived it was very busy, with cars parked down each side street and there seemed to be people everywhere. We walked into the church and took our seats at the front. A brief look around told me that the church was packed but my eyes were focussed on Helen's flower filled coffin. I could not believe, even now, that my beloved daughter was in a place that I could not be.

I couldn't bear it. I had always known where Helen was every day. Her body was here still – but where was she? Inside me, I called out: "Helen come back to me" but the service carried on and then the song Time to say goodbye tore through me. Seeing the pictures of Helen's short life was comforting me but killing me at the same time.

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Chapter Four

Catherine Jane was a New Years day baby, beautiful, funny and adorable. It was an easy decision to have another baby, and so, when Catherine was 19 months old, I came off the pill and, hey presto, I was pregnant again! (It had only taken one month after our wedding to conceive Catherine.)

We were delighted, and convinced we would have a boy. There were no boys on my side of the family. My due dates were quite confusing, ranging from early May to the middle of June.

As with Catherine I was induced, and on May 7th 1975, Helen Louise was born.

I can still see the little face with a look that said: "I'm another little girl and I'm staying!"

From halfway through my pregnancy with Helen, Catherine and I would talk about her new brother or sister. We chose the pram and baby clothes together and Catherine was so excited. We had at that time, against my better judgement, acquired a little puppy called Sooty who nobody had wanted and also a little kitten whose mum had apparently abandoned because he had a wonky eye. We christened the kitten Georgie and he was later renamed Georgie Best.

Catherine was then two and a half and a little tomboy. When we did the weekly shop, (we didn't have a car then), Mike would pop her into our big shopping bag which had wheels. She would stand up and cling onto the handles while Mike ran up the road with her laughing and giggling. I would be pushing the pram, laughing at them both.

With CJ, as Mike called Catherine, and Helli, we loved being parents.

Mike worked long hours so that I could be at home full time to look after our little girls. Life was hard, money-wise, and mad and hectic, with two little ones, a dog and a cat, but we were happy.

Catherine 'helped' us to get Helen's bedroom ready. She was now in a bed and had saved her cot for "Hengo Babe", as she called her little sister. This name stuck for many years.

I had tried to breastfeed Catherine – not very successfully – and had felt a failure, worrying about not being able to provide this basic necessity for my baby. Catherine had been born weighing 7lb 10oz and had lost 3oz soon after. The relief a week later when we left hospital to find that she had regained the weight and was back to 7lb 10oz!

So I thought that the second time around I was a dab hand! Helen weighed 6lb 10oz at birth and I was only in hospital for 48 hours, so although she didn't latch on at feed times, I didn't worry too much.

When we left the hospital with Helen, I was given an appointment to return to the hospital six weeks later. At the time, I thought this was strange, as I hadn't been called back like this with Catherine but as that had been two years before and this time I had only been in hospital for 48 hours so I thought this was now the normal procedure.

I can still remember the day of that appointment. It was a boiling hot day and my Dad took me in his car to Bury. I decided I needed to get a sun hat for Helen before we carried on to the hospital. My Dad left us in Bury and I went into two or three shops to look for a sun hat for her, but they were all massive. The shop assistants "oohed" and "aahed" over this tiny baby and smiled at the fact that all the hats were too big for her. I smiled proudly as they fussed over her but was to find out that this was the first indication of the roller coaster ride ahead of us.

We got to the hospital and waited around in the heat until we were finally seen by a doctor. I asked the reason for the appointment and was told that it was normal procedure to measure a baby's head immediately after birth and compare this to the overall size of the baby. Sometimes this comparison could indicate possible future developmental problems. In Helen's case her head circumference was small. I asked what this meant for Helen. I was told "not to blame ourselves for these unfortunate things that happen". I was completely shocked. I was told that Helen's development would be impaired and bluntly advised to take her home and "not expect too much".

What unfortunate things? What had happened?

I quickly got Helen dressed. Although my eyes were blurred with tears, I managed to fasten the ribbons on the big sunhat. Helen was just 6 weeks old and my life changed completely that day. Family life changed from me being a proud and confident Mum, looking forward to raising two little daughters, looking forward to enjoying all the hard work to come, with all the fun and closeness we would all share, to being a worrying protective wreck. What would the future hold? Would I be able to cope? What would this little baby amount to?

My husband Mike was the type of man who didn't look too deeply into things and was certainly not a worrier. When I told him what the doctors had said, his reaction was: "Helen is Helen and things will be alright". He was never one for long detailed discussions, and in one way that was good for me, but in another, at that time, I had never felt so alone.

My fathers opinion was similar to Mike's. My Mum was upset and worried about me and so I felt I had to minimise any display of my fears to her, otherwise I would have to worry about her as well. My youngest sister was then only fourteen and at that age she was studying hard at school and not too involved in my life other than the visits I made at weekends to see her, Mum and Dad if Mike was working and so I never really discussed my feelings in her presence. The truth was that if I had done I would have been in tears and I felt I needed to be seen as in control, even if inside I wasn't.

My other sister Pauline had three children, the youngest being the same age as Catherine. When Pauline visited us I felt able to share my feelings with her and so I told her about Helen's problems. We discussed what the doctor had said and how her condition would affect Helen's development and future.

My friend, Sheila, had worked as a nurse at Pendlebury Children's Hospital. Sheila told me it was my right to change hospitals and seek a second opinion. I spoke to our GP and made arrangements for Helen to be seen at Pendlebury Children's Hospital.

We had to go there for a full day of tests and assessments with various doctors. Helen was by then a beautiful six month old. As we arrived at the hospital I remember a huge aviary in the grounds with lots of birds inside. Helen was quite fascinated by them and as she watched them I remember a feeling of calm as if somehow everything was going to be OK.

We found the 'Agnew' unit at Pendlebury and the tests began. Helen was weighed, measured, had bloods taken and the doctors assessed the movement in her arms and legs. They tried to encourage her to crawl, which she could not or would not do.

At the end of a long day, we sat in the doctor's room to discuss the results of the tests and assessments. Dr Mackay was a gentle, calmly spoken man who first of all told us that in his opinion Helen's head size was quite in proportion to her body, but that her overall size was small for a full term baby. He had studied all the tests and assessments and referred to Helen as "immature". He did not frighten the life out of me by telling me what Helen would never achieve but did say that with love, encouragement and patience, Helen would find her own way. He told us to take her home and enjoy her, not to expect grammar school qualities, but that there was no reason why she should not be a happy little girl. He finally suggested that I bring Helen to the Physiotherapy Unit so that they could encourage her to crawl and later to walk.

We did not know it then, but it was to be another two years before Helli started to walk.

I needed and welcomed this encouragement to help Helen and so began two years of regular visits to the Physiotherapy Unit at Pendlebury, with a course of therapy structured by a lovely young woman called Joan. Joan seemed to have a soft spot for Helen. She was brilliant with her and made the potentially gruelling sessions fun, introducing Helen to lots of activities – painting, glueing and sticking, playing in sand – all different textures – and coaxing her to crawl by hanging her over a roll and encouraging her to move by stretching her arms and pulling her legs forward – always rewarded by a sweetie!

I went to a local carpet shop and after I explained what I wanted, they gave me one of the long hard cardboard tubes the carpets are rolled in. I carried this home, covered it with an old blanket and used it to encourage Helen to 'crawl' over it towards me, using hers hands and legs, again rewarded with a sweetie. Catherine thought this was great fun and joined in!

Joan then introduced us to the swimming pool! I was petrified of water (and rather overweight) but, hey, if it helped Helen then on went the cossie and in we went, with Helen clinging on to my neck for dear life. After months of visits she let go and kicked and splashed, with Joan always on hand to rescue us both!

There were also dark times. I remember once a friend relating how her 18 month old had toddled over to the dirty nappy bucket (no disposable nappies then), knocking it over with the water and contents spilling everywhere. I silently wished that Helen would do that.

I would dress Helen in pink and white and sit her on a blanket in the kitchen with her toys all around her and she would sit there and be just as clean two hours later. How I wished she would get mucky!

Helen could feed herself and was quite good with her talking. At the baby clinic however she she was not able to stack up the building cubes as high as she should have been able to. Even though we practised at home and she would occasionally achieve the right result I would be willing her to do it on assessment day but it did not happen. Also in the assessments, I could see that having to point to various objects which she did not always recognise was upsetting and frustrating her. I used to come home with her from the assessments quite upset and frustrated myself. I always felt I was the only one fighting Helen's corner, saying what she could really do. There were times when I felt really low.

Still, Mike was not on my wavelength. He would put his arm round me and ask if I would "like a cup of tea". Occasionally when I felt low I would take time out in the evenings and go to our local church. The church itself was always locked but I would find a bench and sit and cry. I would really talk to God, asking him to help me, telling him all the stuff I did not feel able to tell anyone else.

Time went by, and Helen, with the help of walking toys she could hold onto, tottered along. She was a happy little girl, very close to me. As she was not able to run after her sister Catherine, she would become bored. I was always finding something to stimulate her, painting and dressing dollies, though she didn't seem interested in dolls. I thought jigsaws might be good but she seemed clumsy at fitting the pieces together.

At the age of twenty months, Helen became very poorly, with a high temperature. She was not eating, just sleeping. We thought it might be measles as Catherine had contracted this a few weeks before. We phoned the doctor who told us not to worry, to give her paracetamol and plenty of fluids and try to keep her cool.

Mike sat her on his knee and got her to drink some of his tea from his pint mug. This was the only way we could get her to drink anything. After we had borrowed a thermometer and found that Helen's temperature was sky high we phoned the doctor again. This time he did come out and straightaway said she had to go to hospital. My Dad took us in his car, rather than wait for an ambulance, while my Mum stayed with Catherine. Helen was just falling asleep most of the time and when she was awake she was just whimpering. I was frantic.

When we got to the hospital the doctor examined Helen and diagnosed pneumonia. The nurse stripped her to just her nappy and by this time Helen was shivering and turning a nasty blue colour. As she lay on her back with a thin blanket over her she looked so poorly.

Finally her temperature stabilised but she was still kept in the hospital. The following day, Joan, her therapist from Pendlebury, came to visit her, which was a lovely surprise. During her visit, Joan told me about a young woman called Anne who was an Educational Psychologist, who she thought could help Helen.

After a few days Helen's illness had improved and we were allowed to take her home.

We continued with the regular therapy sessions with Joan and during that time, Anne, the Educational Psychologist came to see us. After that she came every week with flashcards, jigsaws and books. She spent time helping Helen to concentrate.

Then the physiotherapy finally paid off. By the time Helen was 30 months old – she was off! She held on to furniture, hands and anything else she could support herself with but she was at last on her own legs. It was a beginning. A chance to start to catch up and to join in, although I was naturally still very nervous every time Helen walked on her own, fearing that she would fall and injure herself.

I carried on with the swimming. Catherine loved it. She was now four and a half and had no fear of the water. Helen would still cling to me but eventually floated about in her rubber ring and arm bands. It was important to me that they both learned to swim. I did not want them to be like me! Also it would be good for them both socially as swimming parties for birthdays were beginning to become popular.

* * *

Chapter Five

Soon it was time for Helen to start nursery school. I worried how she would cope as she was so dependant on me. Like lots of mothers I couldn't bear to see her upset on leaving her but was later assured that she had been fine after I had left. Back at home after school I would ask her what she had been doing that day but, apart from the odd thing, she generally didn't seem that thrilled about nursery school.

On many occasions the teachers would call me in to discuss Helen's development and would tell me that she was not keeping up with her peers, giving me suggestions on how I could help her.

I was always full of emotions and frustration regarding Helen – feeling guilty, worried and protective of her, with feelings inside that 'only I could understand her'. So I would ask God again for help and after a good cry would become determined again. I threw myself into organising hobbies for the girls that I thought would help them both – horse riding, ballet and swimming.

I would put my wellies on and trudge after a stable girl as she led Catherine and Helen, sitting on little ponies, through fields of mud. Catherine was forever shoving her hat back from over her eyes and of course letting go of the reins. She was practically falling off. She was not impressed with this new hobby!

Helen too was shoving her hat back every few minutes, saying: "I don't like it", with me replying: "Yes you will, its lovely".

Needless to say, horse riding didn't last very long.

Both girls quite enjoyed ballet for a while. The trouble was remembering the steps! Catherine was shy and soon got bored with it, whereas Helen, bless her, just could not keep up. My Mum had knitted lovely little pink boleros to go over their leotards and they both looked adorable in them, but again, ballet lessons did not last long.

And then it was time for Helen to start Infant School. Again I had the teachers regularly telling me what Helen couldn't do and, again, I would try everything at home.

I remember one particular time when, after coaxing her to write her name, I said to her in frustration: "Helen, you will have to pull your socks up and concentrate". I could have cried when she did just that – stood up and pulled her socks up.

There were other lighter moments. Helen enjoyed TV and would watch and keep up with programmes and their characters, especially those involving couples, such as Punch and Judy, Mork and Mindy, that sort of thing. One day Mike said to Helen: "who was Robin Hood's girlfriend?" Helen was thinking hard. We prompted her: "Maid..." You could almost see her brain ticking over. We prompted her again: "Maid..." "I know", said Helen, "Maid Redundant!" We all laughed! It was obviously something she had heard a lot on the TV at that time (rather like nowadays). In later years we often pulled her leg about "Maid Redundant".

Helen also bit her nails. I realised that she too, poor kid, was a bundle of nerves. I also realised at that time that Helen needed more specialist care, more than either the infant school or I could provide. Again Mike was sure that Helen would eventually "come into her own" and was not too keen on the thought of a 'special school' as they were then called. But I knew Helen needed help and I persuaded Mike that this was the best way forward for her.

As I look back now, I know that this was the right decision for Helen's educational needs, but socially it put her apart from the other local kids. She did not have any little friends locally who called for her to come out and play or to come and play with at our house. She sometimes played with Catherine and her friends but she did not have any friends of her own.

Before Helen started at her new school I had had a number of meetings with the Head of her previous school. I will never forget those meetings. I would sit in the Head's office, where she would always get me a cup of tea and even offer to let me smoke (which she also did!) I would open up completely with her, telling her everything I felt and I never felt ashamed to cry in front of her. She was so kind and understanding, a friend – a lady I will never forget.

At the first meeting with the Headmaster at Helen's new school, I felt that at long last Helen would now be judged on what she could do, rather than on what she could not do or should be able to do.

So Helen started at her new school. I would take her each morning to the school bus meeting point and hand her over to the escort ladies. Helen was such a sweetheart and they very soon took to her, and she to them.

The school had smaller classes. The children were taught by using practical tasks to teach them to count and write, joining up dots to spell their name. Soon, what had at one time looked like Chinese writing when Helen tried to write her name, now looked brilliant. It didn't take long before Helen was writing and reading. She now found the whole learning process fun and praise was top of the agenda.

Also, Helen still went swimming every week – hooray! A hobby that paid off! She had no problem learning to swim. In fact, she encountered no problems at all at her new school. She was quite a clever little girl.

The social problem was still an issue though. Helen made a few friends, but they all lived in different areas, so playing together after school was difficult. I don't drive and Mike worked long hours. One special friend though was Jill. Jill was a lovely girl (and now a lovely young woman). Her family were so loving and caring towards Helen and they took her into their hearts from first meeting her. As the years went by and Helen and Jill joined various clubs together, Jills Dad, Roy, and Mike developed a routine. Roy was retired so Mike would take the girls to their destination and Roy would collect them and bring them home. We always had peace of mind that they were safe. I did and will always feel that Jill and her family are not just friends but extended family.

Going back to Helen's earlier years at the "new" school, her life and confidence were improving. She badly wanted to join the Brownies like Catherine had. So, finally, her name was top of the waiting list. Kitted out in full Brownie uniform, she held my hand and off we went.

She did not know many of the other little girls, though they knew each other from school but with her new found confidence I hoped she would soon make friends.

However the old problems and feelings surfaced after a few weeks. Helen could not keep up with her peers and did not find any special friend to cotton on to. Brown Owl and the other older girl helpers all loved Helen but she lost her confidence and eventually did not want to carry on going to Brownies. I really felt for her – and for me!

Helen could display naughtiness but I loved it. It is natural for kids to be naughty occasionally and it showed me that Helen had spirit.

If she pushed Mike or me just too far, we would tell her to go upstairs and think about why we were cross. She would stamp up every stair like a baby elephant and then slam her bedroom door until I feared it would come off its hinges. But, I loved every slam!

Over the following months and years she did develop confidence in her own abilities. She was well liked at school and popular with her teachers.

As the girls were growing up, Mike had a job delivering beer orders to peoples homes. The job took him all over New Mills and the surrounding areas. On Saturdays and holidays, Catherine would get up early to go him him. She loved it.

Mike was very proud of his "little helper" and some customers who had become friendly with Mike would give her £1 or some chocolate. They would arrive home together after enjoying each other's company.

Helen wanted to do the same but her attention span wasn't exactly long. I think Mike took her with him twice. Each time, they had hardly got going before Helen would ask: "Are we there yet?" After a couple of hours she was bored stiff and didn't go again! Whereas Catherine liked to 'rough it', cleaning the car, digging the garden etc, Helen was more 'lady-like'.

There were a lot of children at her school who needed more help educationally than Helen and she recognised their needs, which gave her confidence in herself. She developed a kind and understanding nature.

When Helen reached the age of 11, it was decided that some children, Helen included, would attend the main stream school one day each week. Helen didn't enjoy this. On those days however she put her own feelings on one side and would actually stick up for any of her classmates who were being teased. I was so proud of her. It must have taken a lot of guts for her to express her feelings under such circumstances.

Helen could always talk to me, sensibly and maturely, about any topic. She had strong opinions of her own, although she was still extremely shy with other people, even relatives. In company, Helen would sit quietly, just listening, never voicing her own opinion. When we were on our own though she would voice her opinion and we would then discuss whatever topic had been raised.

There came a time when Helen had to travel to school unaccompanied on public transport. I had done the journey with her lots of times and she knew exactly which bus to get on and the walk to her school from the bus stop. I was still concerned each morning I waved her off. My Mum, bless her, lived then near the bus stop Helen used and although she never let Helen see her, she would always just happen to be walking her dog nearby when Helen arrived at the bus stop and got on the bus! She would then telephone me to let me know that Helen was OK. What a relief! Helen knew nothing at all of this until we told her some years later!

Helen's school then became a High School and so she stayed there until she was 16. We would often talk about "Special Education". Helen always felt that she had missed out socially by not mixing with the local children.

Another massive sap of confidence happened when Helen was 10 years old. I was shampooing her hair one day when I noticed that her back was curved. I went cold with dread as my niece had Scoliosis and had had to wear a brace to correct the curve in her spine. I took Helen to see our GP the following day. I said: "I think Helen has Scoliosis". He looked a little surprised until I told him that I knew what it was as my niece suffered from it. He asked Helen to stand and touch her toes. He then examined her spine and agreed that it did look like Scoliosis. Although I knew in my heart that it was, when I heard the confirmation from him, I was shocked.

Our GP referred us to the Children's Hospital and there they confirmed his diagnosis and told me that Helen had a 38-degree curve. She was measured and fitted with a Boston Brace.

The Boston Brace was made of thick plastic, moulded and fitted around her upper body, shaped under her boobs and round her hips. It had straps which were pulled together and buckled to keep the brace firmly in place. Because of the material the brace was made of, Helen had to wear a thin T-shirt under it to stop chaffing. She had to wear this brace 23 hours each day. Her skin had to be rubbed each day with spirit to toughen it up. It was horrendous having to fit her into this every day but I could never let her see how upset I was. As her upper body was rigid when wearing the brace, she could only sit on an upright chair. In the hour it was off, she had a bath and had to do exercises. There were many tears and pleadings of: "don't put it back on". When Helen was 5 she had had to wear a patch over one eye as she had a lazy eye. With her having a tiny little face the patch had to be trimmed to size and she had to to cope with wearing this patch and her glasses for a couple of years, which I thought was bad, even if we were able to tell her she looked cute, but this brace was awful.

With the brace, simple things like going to the loo, getting into bed, getting into a comfortable position or turning over in bed were difficult, and having a 'lie-in' was out of the question. But again, Helen was brave and patient.

Things most people take for granted, like dressing up for a party, also caused problems. Helen was limited in her choice of what she could wear and getting in and out of a car needed careful thought and manoeuvring. Holidays too were different. Helen could not of course strip off to play on a beach or wear a cossie.

The brace had to be worn 23 hours each day until Helen stopped growing, so that was how it had to be for the next 6 years!

Previously, when Helen had started walking, she had to have her shoes built up to help her balance. We would have to buy her 'normal' shoes and then take them to Gartside St Hospital to have them personalised.

So, all in all, with the patch, the glasses, the built up shoes and now the brace it seemed that Helen was always having to fight to 'get there'.

When Helen was about 8, she wanted to go to a summer play scheme with Catherine and a neighbours children. I was pleased as neither of the girls had been interested in any summer schemes before. I thought they would both really enjoy the day. I remember that the day of the play scheme turned out to be very hot. We had to queue up from about 8.30am to register the girls on the scheme. I left them to go to work, saying I would see them later. I felt happy going to work, thinking that it was such a nice day for them and would be of special benefit to Helen, giving her the chance to mix with other children. I normally worked until one o'clock. At about 12.30, Mike arrived at my workplace. Straightaway on seeing him, I was alarmed – the girls – something was wrong. Mike said: "Don't panic, Helen has been taken poorly". She'd had a Grand Mal seizure. When we got there, we found that Catherine, bless her, had been scared to death as Helen had slumped onto her and then started fitting. Catherine had got help and Helen had been taken into a room and laid down until the seizure stopped. I was terrified and after talking to Helen and soothing her I made an appointment that evening with our GP.

Thank goodness, it did not seem to have bothered Helen too much but after questioning Helen and Catherine the doctor arranged for Helen to have tests done. The tests subsequently showed that Helen had had a Grand Mal epileptic attack. This was very worrying but the doctor reassured us, saying they were not going to prescribe any medication at that stage, but would monitor Helen. They had taken into account the very hot day and the fact that the children had been queuing up for some time. They also advised that Helen stay clear of strobe lighting and flashing lights.

After that I was 'on pins' whenever the weather was very hot and in later years whenever Helen went to a disco but, thank God, she never had another seizure.

At school, the children at first asked Helen about the brace but on the whole there was no fuss as they got used to the fact that she was wearing it. During the summer when the weather was hot, when I met Helen from school she would be so uncomfortable, sweating and sore. Once home, she had her brace-free hour. She would strip off to cool down and then have a bath, after which spirit was rubbed into her skin, then she had to get dressed in the brace again.

I would say to Helen: "When this brace comes off for good we will go on a special holiday – where would you like to go? You can choose." Helen would say straightaway: "Disneyland in Florida". "Okay, thats where we will go," I replied.

I promised myself that by hook or by crook I would make that holiday happen.

And it did, when Helen was 16!

Life carried on, Helen generally did well at school but did still not fully grasp the concept of money. She would go shopping and hand over a £1 coin or a £5 note for something costing maybe 60p or similar, rather than sort out the correct coins from her purse. Needless to say, her purse was soon bulging with loose change! I would reduce the bulk by changing it for her, £10 at a time. The problem was however, this then left my purse bulging with loose change!

I encouraged Helen to stand at the back of the shop and take her time looking at the price of the magazine or whatever else she was buying and round up the price to the nearest £1, then count out the coins in her purse up to that amount. I told her she just needed to take her time and not panic and with patience, over time she managed well.

I also advised her that, as adding up on a piece of paper had not worked for her at school, then cheat – use a calculator! Helen took to the calculator with no problem, as she would much later with computers.

Helen's personality was also developing by now and she seemed more relaxed in herself, although still not expressing opinions or joining in conversations, except with me. Helen had a lot of common sense opinions. For example, if we were watching Jeremy Kyle on TV, Helen would be enraged at domestic violence, saying: "Why do they stay with men like that?" I would suggest that perhaps they had nowhere else to go, to which she would reply: "I would rather go to a hostel than stay with them". She would also get upset and angry if she saw bullying or abuse. She also sometimes thought people were weak for putting up with abuse.

Helen's passion was music, especially boy bands. Her favourites were Take That and Boyzone, but most of all, Westlife. I remember she went to a Back St Boys concert and, forgive me boys if I am wrong, Westlife were a support act on that bill. She came home and raved about Westlife and she adored them from then on.

If Helen liked somebody, then they had her loyalty 100%. When Gary Barlow was getting some stick in the press about his weight, Helen got very cross and pointed out what a brilliant songwriter he was and why did people have to have a go at him? Similarly, when Stephen Gately announced he was gay, Helen was very protective of his feelings. She adored Stephen. (He died just a year after Helen).

Helen, like her Dad, also loved musicals. Phantom of the Opera was amongst her favourites. She loved the story as well as the music. In fact she loved all kinds of music, including classical. Most Sunday mornings, she and Mike played all types of music. As well as sharing this with them, I loved it and loved seeing her enjoyment. Looking back now as I am writing this, I hardly recognise myself as that person – life is so different for me now.

We saw Phantom of the Opera about three times, twice in Manchester and once in London. Dancing on Ice was also a great favourite of Helen's. She adored Daniel Whiston. She went to Blackpool to see him and never missed a show on television. Her love of Ice Dancing was quite funny really, as Helen was scared to death of falling on ice! When it was icy, she would cling on to anything she could – gate posts, hedges, parked cars, railings, me – anything! It would take an age to walk with her down the street!

Another great love was sport, especially Manchester United. Although Helen was quite shy, she could get into the right places. I remember us going to "The Cliff", Manchester United's training ground, to watch the players training. There she had her photo taken with Alex Ferguson and quite a few of the players, including Ryan Giggs and Andre Kanchelskis! Years later, whilst on holiday in Ireland with a support worker friend, didn't they spot a member of Westlife in a restaurant and, after nearly fainting, Helen got a photo with him!

Another favourite sport for Helen was snooker. Mike explained all the rules to her and Helen was hooked. Stephen Hendry became her number one favourite player. Throughout all the competitions, Helen and I would stop up until the early hours watching the matches on television. Soon after Stephen won the World Championship for the first time, we found out that he was booked to play in a tournament in Bury, just down the road from us. At the time we found this out, Helen had read a magazine which promised that if you sent in a photograph of yourself with a celebrity then you would win a 'Young Reporter' prize and the photo would be published in the magazine. That was it! I bought tickets for the tournament and off we went, complete with camera! We both enjoyed it immensely. Afterwards we queued with what seemed like hundreds of fans for his autograph and the photo. Helen was so overcome to be standing in front of her hero after queuing for so long and I was fumbling with the camera whilst explaining that we wanted a picture. I forgot to open the shutter! Well, when I realised what had happened, it was back to the front of the queue, explaining and apologising to the World Champion! He was lovely to us both and stood up next to Helen for a brilliant photo which was later enlarged ten times, framed and proudly displayed in her bedroom! And she did get a prize from the magazine, I think it was £5 and the picture was published. She was over the moon.

I also remember one night, some time later, watching one of the sessions of a competition on television. Stephen was playing Mike Hallet and at that point was losing very badly, something like 0 – 8. I said: "He can't possibly win now Helli, he is too far behind. Lets go to bed, he can't win all the time." Helen was in a bad mood. "He can win! come on Stephen!" Helen was tutting away and I was nodding off. Well, he won the next frame and the next – I think the match was the first to 13 frames. And what did he do? He pulled back to be level and then went on to win! Helen was ecstatic: "I told you, I told you, I knew he would win!"

I loved sharing in Helen's happiness and was proud of the understanding she showed of all the topics and pastimes she was interested in. In her own quiet way, Helen was becoming 'herself' and happy to a certain extent.

She would sometimes ask me if she was "normal". I would put my arms round her and tell her that she was perfectly normal, telling her that we are all made up of different qualities. I was proud of her caring and loving nature, proud of her knowing what she did and did not like. Helen was also perfectly normal in her relationships with people, once she had got to know them, more so on a one-to-one basis.

She would ask me about boyfriends and relationships. Did I think she would ever have a boyfriend? My heart went out to her. I said to her: "Just enjoy life Helli. If someone special comes along to be friends with see what happens." Inside I was terrified of how Helen could handle a relationship. I wanted her to experience falling in love and being loved but was frightened to death of the 'journey' there.

Helen learned to value herself and was gaining self esteem.

The years went by and Helen finished school and started college. From this college she was able to go out on various work placements, gaining knowledge and experience of computers and offices routines. I felt she would have made a good office junior.

One placement was at the Town hall and consisted of delivering post to various offices, doing errands and generally being a "go-for". Helen loved that placement and the staff loved her. But, sadly, placements ended and we were back to square one.

During this period, Helen did have the experience of being loved. Simon, a student at the college she went to, fell in love with her. He had a wonderful singing voice and would hold her hand and sing to her. We were invited to his 18th birthday party where he had told his parents he wanted to get engaged. The party was lovely. We hardly saw Helen during the evening as Simon was taking her round, introducing her to his family. Helen was sensible about it all though. They did not get engaged. She liked Simon and enjoyed his company and she admired his confidence and she was more than happy to be friends with him but being boyfriend and girlfriend – that was a different matter altogether! Simon had a lot of health problems and sadly died a few years before Helen.

As time passed, we saw an advertisement for an organisation called "Build". This organisation supported people with learning difficulties who wanted to live independently. They were holding an Open Day locally.

Mike, Catherine, Helen and I went to the Open Day to get more information. By then Catherine had her own flat and Helen had become interested in the idea too. Catherine loved her independence and this became an exciting prospect for Helen.

Obviously I had misgivings and lots of concerns and questions but the day went brilliantly, with all our questions being answered.

When we got back home, we discussed all the possibilities and continued these discussions over the next few days. Over that period, Helen thought about things and decided that she was not ready to 'fly the nest' just yet. I was proud of the way she took her time and thought it all out.

Helen carried on with her life, joining various social groups, enjoying some good nights out and also enjoying holidays abroad. Although this all sounds great, in actual fact, Helen's confidence was really low. She wanted to do all these things but everything had to be planned and we had to go over and over every detail both for her benefit and for my peace of mind. Helen's friendships became more with the volunteers at the groups she joined rather than with the members. The problem was that Helen was in the 'middle' of social relationships. She didn't have the same needs or present the same problems as some group members who, say, were in wheelchairs or who had difficulty communicating at all. Helens problems were not as apparent. It was inside – how she felt – which, of course, could not be seen and that was upsetting.

Once Helen was actually on a holiday, I knew she would be okay, but she had also developed a fear of flying. Thanks to Rescue Remedy though, a liquid which was taken by putting a few drops under the tongue, we were able to get her calm enough to make the flight. She had been fine travelling all the way to Florida – so why these feelings now?

We managed to survive one incident while Helen was going through her fear of flying. We had a good laugh about it later but at the time I nearly strangled her and would have chucked her in the lake at the nearby park!

Helen had wanted to go abroad with one of the groups she belonged to. We had decided that to save Mike getting up in the middle of the night and then have to be up again very early for work, I would stay with Helen at her flat. We booked a taxi for 4.00am. The plan was to pick up another group member on the way and then carry on to the airport. Helen and I were getting ready for a few hours sleep, her suitcases were in the hall by the front door – everything was ready for us to get up, have a slice of toast and be off.

Well, Helen started: "I can't do it. I'm not going". Her palms were sweaty and she was near to tears. I was frantically thinking: "Whats all this about?" I made a drink, we talked through all her anxieties, but still she wasn't convinced. I got cross. I couldn't phone the man we were picking up and tell him because I knew Helen would have been so embarrassed. By now it was about 1.00am. I had a headache and didn't know what to do. Helen had some Rescue Remedy and finally fell asleep for a couple of hours, but I didn't – I was worried to death about how she would feel when she woke up!

Thankfully, once up, Helen seemed okay. What a relief to get to the airport where I could 'hand over'! If Helen had woken up still upset, no way would she have gone. Once her mind was made up, she wouldn't budge, no matter how much I talked to her. Once on her own, with the group and volunteers, if Helen did feel anxious she would cope but it didn't stop me worrying.

Because she recognised her lack of confidence, Helen joined an afternoon class on confidence and assertiveness. Again, I was proud of her for going on her own and helping herself.

* * *

Chapter Six

When Helen reached her late twenties, she decided to look at the services of Build again. We contacted the manager to start the ball rolling.

Helen got a little first floor flat near us. In fact it was in the same block where her sister Catherine had lived a few years previously. We had lots of shopping trips for furnishings and crockery. It was a lovely time, planning where everything would go. We had a laugh with the sofa Helen chose – it would not go up the stairs! We had to have the window taken out to get the sofa in! Her Dad was brilliant, installing and setting up the television, washer and dryer and making sure everything in the flat was safe.

We were very happy with Build and the structure of their support. Helen was allocated 20 hours of support each week, divided between three or four support workers. Helen would plan her own meals and shopping and support would be given with the cooking and more often than not she would have her meal with whichever support worker was with her at that time. Time was allocated for cleaning and washing, bed changing etc but importantly, social time was also allocated.

Build and their support workers were wonderful. More like friends to Helen and myself, and Helen was so happy. In the early days when routines were worked out, it was done between us all and, as time went by, subtle changes were introduced, but always with Helen's needs and goals as the priority.

The structured social time was good for me to see, too, knowing that Helen was enjoying herself with girls of a similar age, doing girly things – cinema, theatre, meals out, evenings in doing hair and having takeaways.

When Helen was coming up to her 30th birthday we decided to have a party for her in a nearby social club. Catherine told me that she had booked a Fireman 'Strip-o-Gram', as Helen loved firemen. At first I didn't believe Catherine but she had made the booking. We just told Helen there would be a surprise at her party. I was concerned that it would upset Helen and embarrass her. I couldn't have been more wrong! She was obviously gobsmacked by the surprise appearance of the fireman and was of course very shy but he was very nice with her and made sure he did not embarrass her too much. She loved the experience and "her fireman" was a talking point for a long time after.

However, in between the organised support time, Helen was still very much a 'home bird', often coming to visit us rather than be on her own. This sometimes worried me, as I felt that Helen was missing out on things she could have been doing on her own, even simple things like sorting her wardrobe or carrying out simple routine housework tasks. Still it was great to know that she was happy and a big stand for gaining independence.

With Helen's fear of flying, holidays had to be worked at. She got to the age when she did not particularly want to go with her Dad and me and I didn't want to go without her, as I worried about how she would manage during the times she did not have support. What would she do with the time she was on her own at the flat if she could not come to visit us? Helen was happy about sleeping on her own at her flat but it would be a long day or days and nights if we were away. I was always sorting holidays out the best way I could but it was difficult. It was great when Helen had a holiday with a support worker as I knew she would be fine.

So, although Helen was reasonably happy, she wasn't letting go of me to enable herself to be totally independent.

In 2003, when she was 28, Helen had a friend who she had first met socially. Their friendship had been good and they shared similar interests, Westlife being top of that list. Helen and her friend, who lived with her parents, talked about sharing a place together. Again this was a normal step to take and a happy time. We discussed all the ins and outs and eventually Helen moved out of her flat and set up home sharing with her friend. Build were again brilliant, nothing was unsurmountable and, as always, Helen came first with them.

Sadly, for various reasons, after about six months, Helen decided she would rather live by herself. So we were back to square one, looking around for a new flat. As luck would have it, her old flat which had been occupied for the previous six months, was now back available for rent. We prepared ourselves for the performance of moving again and helping Helen through all the sorting out and arrangements, notifying the gas and electricity suppliers, BT and so on, and with the tasks of clearing out wardrobes, drawers and cupboards.

Mike at that time had been suffering from stress. He had been made redundant from his job two years earlier and had found it difficult adapting to new employment at the age of 52. A couple of years later, in 2004, he came home one night feeling "not right". We set out to do our main weekly shop but once in the car he slumped over the steering wheel. I called an ambulance and we went to hospital. With the oxygen mask on in the ambulance, Mike started to come round. Once in the hospital Mike had various tests done and about four hours later we were in a taxi going home. They had not given us any diagnosis but I had asked them for something for the pain in Mike's shoulder. I was very worried as Mike was never ill, but I was relieved that the hospital doctor had found "nothing serious" with Mike.

A week later, on 29th January 2004, Mike died, aged 54 He had been suffering from a heart attack when the hospital had found "nothing serious" wrong with him. It took two and a half years for the hospital to finally admit negligence. We were all devastated – our rock was gone. We were on our own.

Helen's move back to her flat went ahead. It was hard work but finally Helen was safely moved in.

Throughout the rest of 2004 and through to 2006 I was running backwards and forwards between solicitors fighting to get justice for Mike, never in a million years thinking I would be doing exactly the same thing for my daughter five years later.

I said earlier that Mike was never a man for getting emotional but he was a brilliant father and husband for taking care of all of us. I miss him so much for his practical love for all of us.

We were an old-fashioned couple, I suppose. Mike was the grafter; the practical one. I never had to worry about fixing things. I had never changed a fuse in my life or decorated or cleaned out drains. All the 'man things' Mike took care of. I cooked and cleaned and looked after everyone's emotional needs. Now I had it all to do.

My Mum had come to live with us in 1997 after my Dad had died. She was then 75 years old. I had said to Mike: "What about Kaydee?" Kaydee was Mum's beloved dog. Although not too keen on the prospect, Mike just replied: "Well, they come as a package don't they?" I will always be grateful for his understanding. Now, there is just Mum and me at home.

After Mike's death, we settled into some kind of routine. By 2006, Catherine was divorced but had my two beautiful grand daughters, Hannah and Molly, whom Mike had adored. Molly was then 18 moths old and Hannah was 4. They had so much fun with Mike. They did and still do miss him a lot.

Because I had never learned to drive, taxis became essential for Helen, especially as she was still spending so much time at home with me. Whenever she left my house at night she would ring me to let me know when she got back to her flat. When I knew she was safely home and locked up for the night I would say "Thank you God" for her safety. This was a massive change to our routines as Mike had always taken her home and made sure she was safe. I was always scared that a new taxi driver would recognise her vulnerability and take advantage of her. I look back now and realise I was a nervous wreck at first. One taxi driver in particular was lovely with her. He would wait outside her flat while she unlocked her door then would not leave until she waved to him to confirm everything was alright before she went in and closed the door. I don't forget some people who were special to me and he was one of them.

Helen was still enjoying her time with her support workers and we still spent a lot of time together. I became concerned that Helen was showing slight signs of OCD, repeating little rituals. I tried talking to her about it but she brushed it of, saying things were fine. She had also started to get panicky about going to the theatre to see her beloved boy bands. She had to have a seat at the end of a row so she could get out and she was scared of being among crowds.

About this time, Helen decided to do some voluntary work to help with her confidence problems. She helped Age UK, two days a week, working with elderly people at a day care centre, assisting in quizzes, dominoes and games of bingo, sometimes shouting "House" when it wasn't! She didn't get embarrassed, but joined in with the laughter! All the elderly folk loved her because she was gentle and shy.

Helen was used to elderly people as her Nana had lived with us for some considerable time. Helen's relationship with her Nana had been good, however, she was not always understanding of her Nana's ways and the fact that I shared my time between them was sometimes a problem.

Maybe, the fact that at times I had to explain to Helen that elderly people did have a point to make and perhaps she should listen and try to understand, made her a little more tolerant because, as it turned out, she loved her job with Age UK.

One day during this period, Helen and I had to go to the local hospital for one of her checkups. We had to use the lift and found we were sharing the lift with an elderly lady in a wheelchair. She smiled at us both and then Helen bent down and put her hand on the lady's hand and they exchanged a few words together. I was amazed. This was so out of character for Helen to make the first move. When we got out of the lift, Helen explained that she knew the lady from the Day Care centre.

I was so proud of her. The old Helen would have been too shy to even 'let on' to the lady. She would have stood behind me, not out of rudeness, but because she would not have known what to say.

The staff at the Day Care Centre were lovely and Helen really enjoyed their company and banter. At Christmas time they would all go out together and they included Helen in their arrangements. Helen loved it. If a member of staff had a birthday or one of them was leaving to start maternity leave, Helen would buy them presents. She really cared for them all and was very happy there.

I went to see them all after Helen died. The staff and clients were devastated and still talk about her lovely smile to this day.

In the summer of 2006 I had planned to take Mum and her friend Clare to Blackpool for a few days, staying in a nice little hotel. Helen had said she would like to come too. On one day during the holiday, Helen and I went off on our own, leaving Mum and Clare to do their own thing. We decided to take the ferry over to Knott End. Once there we found a lovely 'olde worlde' coffee shop and sat in the garden chatting. Helen suddenly took my hand and said: "Mum, I do think I'm having some anxiety problems?" We discussed the repetition issues and the anxiety regarding the theatre.

I was so glad Helen had brought it up.

We started walking back to the ferry when Helen said: "Mum, I do love you. You always understand and help me." I said: "Helen, I will always be here to listen to you and I will do anything to help you because you are my daughter and I love you to bits. Now don't worry, we will go together to see our doctor." With that we made our way back to the hotel.

Helen was now facing yet another hurdle. We went to our doctor and he listened quietly. He had known Helen since she was a toddler. I didn't realise then just how much he did understand Helen. After Helen had passed away he came to see me (eighteen months after he had retired). He said then: "Helen had a lot of problems to overcome, didn't she?" I just nodded, realising that he was totally understanding of her difficulties. That meant such a lot to me.

On the day we saw him, he prescribed some medication for Helen to help her with her anxiety and also suggested counselling. I went along with her to the counselling. There we met a young man I already knew, having met him when I was working at Prestwich Hospital. He was lovely with Helen and she started a therapy programme. Over a period of time she became more relaxed and actually went to a concert with Catherine. I was thrilled with her progress.

By 2007 our GP had retired. We really missed him. We stayed with his replacement for a while but decided to change to a female doctor. Around this time Helen had started to gain weight around her tummy. She had lots of aches and pains and would sit rubbing her stomach. As her periods were heavy, I put this down to period pain. Many years earlier our doctor had put Helen on the pill as her periods were lasting up to 13 days. She had been on that pill for about 30 months and things seemed a lot better.

When Helen felt 'out of sorts' she would say: "You don't think I've got the same as my Dad do you?" I would hug her and tell her: "No Helli, with your Dad it was his heart." Although Mike did have some pain in his shoulder, I certainly did not think that Helen had anything to worry about.

Even so, I was anxious for Helen to see a female doctor, who I believed we could talk to about female ailments and get some reassurance. In November 2008 we made an appointment and, as with every appointment, I went with her. I explained my concerns regarding the weight gain on her tummy and my fears that something untoward was going on. The doctor said she would arrange for a scan. I felt relieved at that, as we would at least know whether or not it was just going to be a case of dieting and exercising. Helen had been to Weight Watchers to start on their programme

We discussed Helen's aches and pains with the doctor and the slight acne she had on her back. The acne was not visible and the doctor did not examine it or even look at it. She prescribed the pill, saying it would help with the period pains. We left the doctors and called at the local chemist with the prescription.

Through Build we had found out about an organisation that helped people with disabilities to part-own their own home. After contacting them and attending various meetings we got confirmation that Helen was eligible. We were delighted and started looking at suitable properties. Helen was put on a waiting list for a mortgage with the company.

By now it was 2008 and Helen and I had found a lovely little house near me. I had plans that maybe I could buy another little house for Mum and I on the same estate.

Life was as last bucking up.

Three months later, in February 2009, Helen had come to stay with me for the weekend. She had a persistent cough, no cold or other symptoms, just a bad cough. She was constantly coughing and couldn't sleep. After a day or two I decided to ask for a house call from the doctor. It was a male doctor from the practise who came that morning. Helen went into her bedroom, the doctor followed her and I followed him. He listened to her chest and prescribed antibiotics for a chest infection. Since she'd had pneumonia when she was a baby, Helen had never had a chest infection. My Mum picked up the medication from the chemist. Later that day, I had to have the tablets changed to a liquid form as I had forgotten to tell the doctor that Helen had difficulty swallowing them. She had managed to take them crushed the first day, but I thought the powdery bits may have aggravated her cough

By 13th February 2009, the cough did seem to be loosening and that was the day the viewing of the house was to take place. The last few hours I would spend with my precious Helli.

* * *

Chapter Seven

When I decided to write our story, it was autumn time. I was walking up the lane, thinking of Helli, as I do every single day. I was aware it was a beautiful day. Crisp autumn leaves had fallen quite thickly onto the pavement. I could hear Helli as a young child saying: "Oh Mum, its lovely, its like walking through cornflakes"!

I smiled at the memory – If only life could always be so magical.

The God I had thanked for all the good he had shown me and the care he had given Helen, his very presence, I had always believed in. My God who understood me completely, forgave me when I 'nodded off' while saying my prayers in bed at night, and understood my failings well – he died when Helen died. I realised that, unlike my Helli, He had never existed. How could I have been so gullible as to really believe that a greater being actually loved and cared for me? No, life is what you make it. Make a mistake and you live with the consequences. I had made the mistake of allowing that doctor to give Helen that pill. I was bereft. As I said earlier, I can't swim, but now I felt I was in the ocean, frantically flaying about, looking for a piece of driftwood or anything to hold on to, but there was nothing, just emptiness.

Following Helen's death in February 2009, the inquest was scheduled for June 23rd. During the intervening four months, I had contacted the solicitors I had dealt with after Mike's death. I was preparing a complaint against the doctor who I believed should never have prescribed the pill Dianette. The doctor had given Helen no informed choice and had not even consulted Helen's case notes. I was amazed to find that my solicitors advice was that, apart from engaging a barrister for the inquest, there was nothing else they could do.

The day of the inquest arrived and along with my Mum, my daughter Catherine and close friends I made my way into the Coroners Court. I had spoken to my barrister about the procedure and the nature of my complaint and felt he was fully supportive. I didn't realise at the time that there were reporters and TV crews waiting to interview me.

The pathologist presented his report. Helen had died from a DVT. He indicated that the fact that a DVT developed was most certainly linked to the fact that she had been taking the contraceptive pill Dianette.

I gave my evidence to the Inquest, shaking with nerves. I remembered and related every detail of the last weeks of Helen's life. This was not difficult because those memories are etched into my mind for ever.

The female doctor then gave her evidence. I could not believe that this was a professional woman speaking. Apart from the standard questions of identity asked initially by the Coroner, every other question prompted one of two replies – either "I don't know" or "I cant recall". She had no records to refer to and quite honestly it was as though she had never been involved; the woman who had prescribed the pills that had killed Helen.

I had gone to see her a few days after Helen's death. I walked into her surgery and she looked at me and said how terrible it all was. She said: "When I heard, I was going to phone you but you know what it's like, you get so busy don't you?" I could have slapped her.

Next into the witness box was the male doctor who had had the last contact with Helen when he made the house call and diagnosed a chest infection. I expected him to be in witness box for only a very short time but instead his performance was like something on television. He talked about DVTs, his personal experience of them and his concern that Helen might be susceptible to one and described how, apart from examining Helen's chest, he had "examined her legs for any signs of DVT", describing how he had palpated her calves. I sat upright in my seat – this was wrong! I had been with Helen throughout his examination! He had never examined Helen's legs or calves. My barrister questioned him again and again about this leg examination. He asked: "A young woman with a bad cough – you would be looking for and examining for signs of DVT?" "Yes", was his constant reply. He continued under cross examination by my barrister until the Coroner stopped the proceedings, saying to my barrister: "I think you have made the point." With hindsight, I should have jumped up in the court and challenged the doctors evidence.

After all the statements had been made, the Coroner retired then returned to announce that she had decided that her verdict was that Helen's death should be recorded as "Misadventure".

When we came out of the Coroners Court after the inquest I found reporters and camera crews queuing up to ask me questions. One of the reporters seemed to have sensed what the truth was – incompetence from both doctors. I was advised by a member of my legal team to be careful about what I said to the press. If I had not been warned I would have talked all night about my disgust and contempt for those doctors. Helen's story was in most of the national papers the next day. A day or two later, Granada News called me to see if I would do an interview with them. At the time of all the media interest I was out of my depth and not certain if it was right for me to air all my feelings regarding the doctors. Now I would do it in an instant.

At that time I also blamed the drug company who manufactured Dianette. Later, I wrote to them and asked for their comments regarding the significance of the cough. They eventually referred me to one of their standard leaflets which listed "a persistent cough for no apparent reason as a potential sign of a DVT."

After the Inquest I could not let matters rest there and registered a formal complaint with the General Medical Council against the two doctors.

My friend David has been brilliant in helping with each and every direction I wanted to go in pursuing this complaint. Little did we know then the long, arduous, complex and continually frustrating journey we were setting out on – a journey which, three years later, has still not reached its conclusion.

* * *

Chapter Eight

When we registered my complaints with the General Medical Council we entered a complex and frustrating system.

From the outset it was obvious that I was not going to get any sympathetic response from the General Medical Council regarding my complaint. Their reply was that my complaint was outside their complaints procedure and would be put on file and perhaps referred to if they subsequently received more complaints from other parties about those doctors. The GMC also informed me that they had referred my complaint to the doctors' employers, the local Primary Care Trust, who had responded that they had no concerns about those doctors. All very nice and neat but no investigation at any stage.

Telephone calls to the Investigations Officer at the Manchester offices of the GMC were met with indifference. During one conversation I was actually told that I could write as many letters as I liked – they would all just be added to the file.

I pursued my complaint with Bury Primary Care Trust over the following weeks and months, exchanging numerous letters and telephone calls with their Complaints Manager.

The initial response from the PCT was that after considering the verdict of the Inquest, they could see no reason to repeat the investigation. It took over 12 months to get clarification that the "investigation" they referred to was in fact the Inquest, which, of course, was an investigation into the cause of Helen's death, not really into the performance of the two doctors.

The only action we could determine that the PCT had taken was to circulate an enquiry form to all their departments, which was a 'tick-a-box' type of document, asking if anyone had any concerns about the doctors. Again, we could not get any clarification if this circular highlighted my complaint or told the departments about my complaint, or merely dealt with each department's historic dealings (if any) with those doctors. Based on this feedback, their reply to the GMC was that they had no concerns about the doctors.

The only other action the PCT took at that time was to pass my complaint on to the two doctors for their formal reaction.

After I had received these formal replies from the two doctors, in September 2009 – which I felt were bland, inaccurate and unacceptable – I related my feelings to the PCT and stressed our request that some action should be taken. It became obvious that the PCT, through their Complaints Manager, had adopted the stance that no further action was needed on their part and getting any further information or action from him proved very frustrating.

After exchanging numerous letters and telephone calls with the Complaints Manager, he gave us the option of attending a meeting with a Lay Conciliation Officer, intimating that this was all that could be done and that my only other option, as far as they were concerned, was to exercise my right to refer the matter to the Ombudsman.

We researched what we could about the Lay Conciliation Service and found that it was designed as a vehicle to get patient and doctor together in an attempt to talk with each other, under the guidance of a neutral Chairman, to resolve differences and repair the relationship between doctor and patient. We felt that this was not an appropriate way to deal with my specific complaints and could not see any resolution coming from it, however, we felt we had to demonstrate that we had explored all avenues and not give the PCT any grounds to accuse us of not co-operating with the process.

We decided therefore to accept this offer and approach the meeting with an open mind and, in November 2009, I provided the PCT again with a formal detailed report on all aspects of my complaint against the two doctors.

The main points of my complaint were

The prescription of Dianette without any reference to or consideration of Helen's records, even though this was that Doctor's first meeting with her.

The subsequent change in emphasis by the female doctor on the significance of Acne in her prescribing, when she had not examined this condition.

The absence of any informed choice when prescribing Dianette.

The standard of care afforded Helen by the doctors.

The differing version of events presented by the male doctor at the Inquest.

After a couple of cancellations from their side, the Lay Reconciliation Meeting eventually took place at the headquarters of the PCT in Bury in January 2010, almost 12 months after Helen's death.

David came with me to the meeting, which was chaired by the Lay Conciliation Officer. The two doctors were there, as was an independent doctor, who had been asked to attend by the PCT and who was an expert on contraceptive pills. To our surprise, there was nobody else there from the PCT!

At last I had an opportunity to question the two doctors face to face but it soon became evident that we were not going to achieve any resolution or closure on that day.

The female doctor had the same approach as at the Inquest, not committing herself or admitting to any mistakes. She would not accept that she had not made any omission by not referring to Helen's medical records before prescribing Dianette and even at one point argued that there was nothing wrong with not consulting a patient's medical notes, even if it was the first time she saw that patient. She was not forthcoming at all as to why she appeared, between the actual consultation and the Inquest, to have changed the emphasis on the importance of the presence of acne, dismissing that fact that she had not even looked at the acne, let alone examined it. She would not concede that she was at fault with regard to any of the points in my complaint against her. In fact, with regard to informed choice, she contended that Helen would have been told of all the risks when the pill Cilest had been prescribed, which was 16 years earlier!

The independent doctor reported factually on the potential side effects of Dianette and the comparative rates of fatal side effects, and answered in detail our questions on the possibility and timescale of a DVT happening and the likelihood of one being present when Helen had been examined. The female doctor contested the evidence we had presented regarding the fatality rate of Dianette compared to the background rate, saying it was actually less than twice the background rate, much lower than the rate of four times we had submitted. The independent doctor could not confirm this at the meeting but agreed to check his figures. We later found out, when he eventually reported back, that the up to date statistics showed the rate was actually twelve times the background rate! We took this to be another example of her shortcomings.

It was then our turn to question the male doctor, the last doctor from the practice to have seen Helen. I found him to be smug and arrogant. In the detail of my complaint, I had confirmed the fact that I had been present during all of his visit to Helen, which had taken no more than 6 minutes and knew he had not examined her legs. In addition, we had subsequently measured the space in Helen's bedroom, where his examination had taken place, and we had shown that there was only a 20 inch gap between the end of the bed, where Helen stood, and the wall.

He ignored this and again gave the same version of events that he had given under oath at the Inquest. He said he had come to the house with DVT in mind and had fully examined Helen's legs, including palpating her calves. He refused to demonstrate how he had carried out this type of examination of her legs and calves in such a confined space but was adamant that events had taken place as he had said. I was appalled by his arrogant attitude, while looking me in the eye. I said: "This is not right. I know you did not examine her legs and you know that too. I was in the room with you throughout your visit." But he would not admit that he was wrong and eventually The Lay Conciliator concluded that we would have to agree to disagree on that point.

We came out of the meeting not only disappointed that there had been nobody from the PCT present but also feeling extremely dissatisfied, knowing that no resolution would come from that meeting. When we received the summary of the meeting from the Lay Conciliator, our feelings on the day of the meeting were proved correct.

I disagreed with much of the content of the report of the meeting, which the Lay Conciliator eventually presented, and her conclusions. I sent her a detailed reply, but never had any satisfactory response.

Nothing more really came from that meeting and I informed the Complaints Manager that I was not satisfied by the outcome. I was extremely annoyed and disappointed when he told me during the telephone conversation that he had not expected anything to come out of it either!

And so, we continued again trying to get the PCT to take some action.

We were exchanging letters with and asking for information from the Complaints Manager throughout 2010. In reply to one of my repeated requests for details of what investigations, if any, the PCT had carried out into my complaints, the Complaints Manager, in mid 2010, wrote and said my request for such information was "outside his remit" and so he had referred my request to the PCT Director of Standards! Requests for updates were met with silence and then with the statement that the Director was no longer in office and that his deputy was on holiday! A request in October 2010 for an update on this matter did not even get a reply.

We felt throughout that the strategy of the PCT was to stonewall us in the hope that we would eventually give up the matter and go away. I wondered how many other people with grievances against doctors or the PCT have met with the same attitude and have given up? But they had underestimated me. There was no way I was going to give up in my quest for justice for Helen.

In the course of all this pursuance of the PCT, I had researched what other organisations could help me. One of these was the Independent Complaints Advocacy Service (ICAS). Meetings and discussions with them lead us to believe that there was little additional help they could give, other than 'holding our hand' at any meetings we had. However, through one of their officers, I was introduced to a charity called AVMA, who had an office in Manchester. I contacted them and arranged a meeting.

David came with me and we met one of their advisors, Stephen. He was very sympathetic and helpful and advised us on how to continue with the complaints procedure. He also referred me to an acquaintance of his who specialised in medical negligence claims and passed the details of my complaint to her for advice.

Following Stephen's recommendations, in my next letter to the PCT in July 2010, I formally requested that, as one of the major causes of my complaint had been the standard of care afforded Helen, the performance of the two doctors should be reviewed by an independent doctor, possibly from within the PCT, and the resulting measure of their performance be compared to the minimum standards required. To this day this request has never even been acknowledged, let alone followed up.

Around the same time, because I was given the impression by ICAS that there was a time limit involved, I escalated the matter by raising a formal complaint with the Parliamentary and Health Service Ombudsman. I of course notified the PCT that I had done this, but continued with my attempts to get some kind of action from them.

However, once the PCT was aware that I had brought in the Ombudsman, although letters and phone calls were still exchanged, their attitude seemed to change slightly, as though they knew they could now wait for the Ombudsman to deal with me and not bother about me anymore until they heard differently.

It would take many months of waiting, until February 2011, before I received the decision of the Ombudsman.

My initial response was one of despair as I read that, while they were sympathetic towards my complaints, they were not going to take any further action and, although I may have been disappointed with their reasons not to investigate, they felt they had sufficiently explained the reasons for this decision.

A more detailed study of their report, however, and the detail of their comments and recommendations, lifted my mood.

Their report was very critical of the performance of both doctors and the PCT.

With regard to the prescription of Dianette by the female doctor, the Ombudsman ruled that this was reasonable but seemed sympathetic of my complaint regarding lack of informed choice and was very critical of the overall involvement of the female doctor and the assumptions she had made regarding Helen's knowledge of contraceptive pills, given Helen's acknowledged learning difficulties and the resulting lack of informed choice. They repeatedly used the word "unreasonable" with regard to that doctors performance and concluded that, at one point, her actions were "serious enough as to amount to indications of service failure."

They reported that my insistence that the male doctor had given a different version of events at the Inquest was outside their jurisdiction. While they accepted it was reasonable that he had prescribed antibiotics after his examination, they were critical of his record keeping, describing his lack of recording negative findings as "unreasonable". The report commented that this lack of a formal record did not support either his evidence at the Inquest or his response to my protestations at the Lay Conciliation Meeting that he had not examined Helen's legs.

The Ombudsman was also critical of the PCT. In examining the PCT's handling of my complaint, the Ombudsman pointed out that, in accordance with established practice, "bodies can determine what actions need to take place in order to provide a response to the complainants concerned" and concluded that the PCT had been "unreasonable" in not carrying out any investigation of their own and had therefore "missed an opportunity" to handle my complaint correctly.

I was also pleased to read that the Ombudsman had found some of the PCT's correspondence to be "confusing and at cross purposes".

The Ombudsman's recommendations were that both doctors should write to me by 11th March to "apologise for their shortcomings" and provide me with assurances that they have addressed these issues, and that the PCT should review the findings of their report with me.

I found the decision that the doctors should write and apologise to me very disappointing. At the end of all this, all they had got was a 'slap on the wrist'.

The Ombudsman concluded by saying that they hoped the comments provided by their advisors would provide me with some reassurance that my daughter's tragic death did not appear to be due to the omissions of the practice.

So who was responsible? Me? For trusting a doctor?

I was also annoyed to find out through the Ombudsman's report that, immediately following Helen's death, the doctors practice had conducted a Significant Event Analysis Meeting. No one had ever informed me of this.

The meeting had apparently concluded that fuller records of consultations should be made, as there was no record of any discussions regarding contraindications and risks of combined oral contraceptive pills. I wondered if the meeting had recorded that in Helen's case there were no records because none had taken place. An action plan had also been produced by the practice to review all patients on Dianette and an audit had found that the monitoring of patients in that category had "not been robust". Was this failure the reason why neither the practice nor the PCT had bothered to inform me of the meeting?

Following that meeting, it seems measures had been put in place to recall such patients for an annual review. My personal understanding of this is that it took Helen to lose her life before the safety of patients taking Dianette was considered important by the practice.

We arranged a meeting in March 2011 with the PCT to discuss the report from the Ombudsman. David came with me and we were accompanied by a member of my local MP's staff, as I had also recently contacted him in my struggle for action. At the meeting we met for the first time the PCT's Board Secretary and also for the first time the PCT Complaints Manager.

On referring to the detail in the report, we were amazed to find that they did not seem to have the full Ombudsman's report and the information they had from the Ombudsman did not include the detailed criticisms which were in the report to me! They had to photocopy our version of the report before we could proceed with the meeting! Although we discussed the report in great detail, they at no stage promised any further action and it became obvious that they would not do so at that meeting. We also raised my request from the previous July that the performance of the doctors be reviewed but this was also glossed over. The overall impression was that they saw the Ombudsman's report as the final conclusion without the need for any further action on their part. The meeting concluded with the promise from the Secretary that he would take on board all the points we had raised and that he would reply in writing as soon as possible.

Our fears were confirmed when I received his reply at the end of March 2011, which although referring to all the points we had covered, did not promise any further steps would be taken, other than them taking on board the comments of the Ombudsman and concluded by saying that from the perspective of Bury PCT the relevant investigations and associated responses had now been completed! How? When?

On 8th April 2011, I returned a detailed response to his letter, but 'surprise surprise', no reply has ever been received!

By 11th March, I had not received any letter from either doctor and informed the Ombudsman's office. They investigated and called me back to tell me that the female doctor had in fact sent her letter to Helen's old address! This was just another indication of how incompetent and uncaring she was.

I eventually received letters of 'apology' from both doctors, each dated 17th March. Neither carried any reference to the fact they had not been sent by the instructed date.

I found both letters unacceptable. Neither gave any indication that they accepted they had failed or demonstrated any shortcomings. I found both their letters to be cold, uncaring and condescending.

The letter from the female doctor gave the impression that she was only writing because she had been told to, not because she recognised the shortcomings identified by the Ombudsman or acknowledged that she did not provide Helen a good standard of service. She commented: "the important point is that you feel I did not do so."

The letter from the male doctor referred to his examination of Helen as though it was an undisputed fact and also gave no indication that there were any shortcomings or unreasonable actions on his part. His final paragraph stated: "I will endeavour to keep more comprehensive notes to include more negative findings." The use of future tense ("will") would indicate that until writing the letter he had not made that change, despite the Significant Event Meeting a year before and the subsequent criticisms from the Ombudsman. The use of the phrase "more negative findings" surely misses completely the fact that all his findings should be recorded.

I replied formally to both letters, rejecting them both and sent copies to the Ombudsman. To date, over 12 months later, I have still not had any further response from either doctor or the Ombudsman.

After I received the Ombudsman's report, we discussed it in detail with Stephen from AVMA. From that meeting came the realisation that the Ombudsman had said that the matter of the male doctor's version of events that I disputed was outside their jurisdiction and that the PCT were obviously not going to take any action on the matter.

Around the same time I received confirmation from Stephen's "medical negligence" contact that although the Ombudsman had been critical of the doctors and the PCT, their report did not give any grounds for taking civil action through the courts.

This left the GMC as the only route. I again wrote and pointed out to them the criticism of both doctors in the report from the Ombudsman, requesting that they reopen their file.

It took another three months and numerous chasing phone calls from me before I received a reply in June 2011 from the 'Godlike' GMC that they were now "considering" a review of my complaint.

How absolutely splendid of them I thought.

The first consequence was that this "consideration" would take place in London rather than Manchester, which only meant my progress calls were now made to a London number rather than local one. Again you form the impression that they are stonewalling; waiting for you to give up and go away. It actually took them another seven months, taking us into January 2012, before they informed me that they were not investigating the female doctor but had decided to "reconsider" their earlier decision not to investigate the actions of the male doctor. I was asked by the GMC to submit by mid February 2012 (Helen's third anniversary) any evidence I wished them to consider.

I still felt very strongly that the performance of the female doctor, after the criticisms of the Ombudsman, should be investigated by her governing body and so, with David's help I compiled a detailed letter providing my reasons why they should investigate both doctors and also provided a copy of an audio recording of the Inquest, so they could hear for themselves the male doctor's evidence. Their response was that I would hear from them by the end of March 2012. I telephoned at the end of April 2012 to be told they'd had problems listening to the recording but were having it transcribed and I should hear from them by the end of May. Soon June arrived, but here I am, still waiting!

During the past two to three years I have had numerous reporters and TV producers contacting me for an update. Various programmes have been made during this time about the complete failure of official bodies like the GMC to understand or help families facing battles similar to mine.

So, what is the GMC? What are they supposed to do? Who are they answerable to?

I understand that they are funded by the doctors themselves. If so, then to me that says it all.

It has always been my intention to go back to the media if I do not get a realistic outcome and this is what, three years on, I am still waiting for.

* * *

Chapter Nine

During the first few months after Helen's death, out of habit I found myself asking God: "Why?" Then I would feel a stab of pain as I remembered that he had gone too.

The trouble was, I missed my imaginary God. It felt like another bereavement. I spoke to lots of friends and family, some believers, some not. I listened to everything they said about their experiences with religion. Some things stayed in my head as 'something to think about'. Other things I found I could not relate to.

I have always regarded myself as a very logical person and yet, with God, I had been totally sure that everything that happened to us was for a reason. Now I couldn't believe that at all. Why Helen?

None believers would throw up the old argument that, if there is a God, why would he let bad things happen? My view was that he had given us all a brain to use and sadly a lot of bad things were manmade. On the other hand, a lot of good things also happened in the world when the brain was put to good use.

It would have been so easy to go back to my belief in God, but I could not accept the bad thing he had let happen to Helen. Why?

I felt like I was sat on top of a mountain, my complete belief was like a jigsaw, huge and whole, when suddenly it fell off the mountain and I watched it hurtle down hundreds of feet, where it smashed into thousands of pieces, mixing up with all the other meaningless rubbish of life. I had to accept that it had gone.

Over time I came down from the mountain and tried to find some of the pieces. I held one piece and tried to fit it to another piece I had found. But it didn't fit, so I threw it away. I would carry on finding pieces that didn't fit until, one day, a piece I found did fit. I put them together and carried on looking. Eventually, more pieces started to fit together. It took a long long time and sometimes I would wonder: "how does this fit?" One such piece was when I thought of how many times I had worried about what would happen to Helli when I was gone. After losing Mike so young and so unexpectedly, what if the same happened to me?

Catherine had had her share of sadness, being on her own with Hannah and Molly.

I wanted her to meet someone special. I used to pray to God for her to be happy and for her to have a happy life, even if that meant a move away for her. I didn't want to pile my fears for Helen on to her. I knew she would always look out for Helen, but for her to be completely responsible for Helen was not fair.

Saying this, Helen was happy with her support workers and I really don't think she would have wanted to move with Catherine.

It was me Helen needed. I was her everything. She loved me unconditionally as I did her and Catherine. There wasn't a day I did not worry about the future.

I have just watched a TV programme I recorded a while ago. It was called Letting Go.

It was about young people with learning difficulties and how their parents worried about their future and what would happen if they were no longer there. I completely identified with them. They were looking at their sons and daughters living independently. My heart went out to them. One Mum had said she had thought of if her child was to go before her. I felt so much empathy with that lady.

Had it been God's will to take Helen first?

Everyone had said to me in the years since Mike died what a strong person I was.

I didn't know if I was strong or not – I was just me. But it made me think. Could Helen have survived without me? She was 33 and could have lived to an old age. If I was to die when I was 70 or 80, she would have been 50 or older. What would become of her at that age? I'd had to manage without Mike and I hated being lonely and responsible for everything. But I still had Catherine and my two grand daughters and Mum to think about, so maybe this gave me the strength to cope when Mike and Helen died. But what or who would Helen have had?

Maybe this piece did fit.

I had gone to Sunday School as a child to please my Mum and Dad, and went to Church when I left school because my friend fancied the Vicar – not really the right attitude or reasons for a future believer!

As a Christian, I did not know much about the Catholic faith and the Virgin Mary, but over recent years my granddaughters have been brought up in the Catholic faith and my daughter Catherine converted to Catholicism, as did my Mum, at the grand old age of 80! I have always attended the Church services for their Confirmation and First Communion. These services have been beautiful and so very moving.

At my low times I thought about the Virgin Mary. She was a Mum too, who lost her son. Could I learn anything from this? I did. Also, when saying the Lords Prayer, we say: "Thy kingdom come, thy will be done, on earth, as it is in heaven." I do now believe that it was God's will to take Helen.

This belief does not make my loss any easier to bear as I am still fighting her corner and will carry on doing so until I have a realistic outcome. But it does give me a certain peace of mind to know that nothing or anyone can ever hurt Helen again.

When people commented on how strong I am and said: "I don't know how you carry on", I wanted to say: "Well, I have to carry on, because I keep waking up each day." But at times it really didn't matter whether I did or did not.

But then, when I found my God again, another awakening occurred. I realised I had been given the most precious gifts that I still have – my daughter Catherine and my beautiful granddaughters, my Mum and my wonderful friends and family. How selfish I have been. And yes, my prayers for Catherine to find happiness have been answered.

I have a lot to thank God for. It was as if after Helen died that I knew I had those gifts but I was saying: "I can't see or feel them anymore, so whats the point?"

It is now the end of June 2012 and I have just heard that the GMC have decided not to take any action regarding the male doctor and have now finally closed their file on the matter. This came as no surprise whatsoever.

It boils down to the fact there was nobody present during his examination of Helen, so it is his word against mine regarding what took place that day. (As if I should have decided we needed a witness present in the bedroom.)

Lets remember that our doctors are GPs – General Practitioners. I understand this as meaning that they know a lot more than me about medicine and the human body, a hell of a lot more, but at the end of the day they have not specialised in any particular area. Because this doctor did not examine Helen's legs, does anyone know if a specialist at the hospital would have detected a DVT at that time and started treatment? We will never know.

As the Dianette leaflet said: "a persistent cough for no apparent reason could be the start of a DVT." Helen didn't get the chance to have the cough investigated.

I wonder how, after learning of Helen's death, the practice dealt with the male doctor and his account? How they dealt with the fact that he made no notes whatsoever of his examination and his apparent concerns about the serious potential of a DVT? Were they gullible enough to believe him? No, I believe the practice chose to believe him to protect their reputation.

Knowing the GMC's final decision has given me a great sense of freedom. I have gone down all the appropriate complaint routes. Yes, I have made some progress. The question marks, complaints and criticisms about these doctors are on record and known to the GMC, the PCT and the Ombudsman, and that information will be highlighted and considered again if, in the future, anyone else has cause to complain about them. I am now free to contact the media and write our story.

* * *

Chapter Ten

So, where am I going now?

After Helen died, I decided to have a conservatory built. I had a large garden and I thought the project of getting a conservatory and decking would give me something to focus on.

A good friend who had always done jobs around the house for me started the building. It was a long job but eventually it was all finished and the conservatory and linked decking looked beautiful. I busied myself filling tubs with flowers and selecting garden lights.

I thought of the conservatory as my "peace room" where I could sit and think of Mike and Helen. I had their photographs in the conservatory and filled it with a collection of fairies, candles and other pretty ornaments, little reminders of both of them.

One night I took a glass of wine outside and sat at the table on the decking area, looking at the garden lights twinkling away. At first it was lovely sitting there but then sadness and loneliness washed over me. I had always shared the rewards of our hard work with Mike. At my age, Mike and I should still have been together. It shouldn't have been just me sitting alone grieving.

And so, three years on and eight years after Mike died, I have decided to sell the family home I have lived in for thirty years and start a new chapter.

I still have my Mum living with me, bless her. She is ninety now. Fifteen months ago she became disabled and can't walk anymore. I am now her carer and I do my best for her to be happy for whatever time she has left.

Mum attends the same day centre where Helen worked. She is so proud to hear how well thought of Helen was.

When Helen was busy making lists for her new home, she had always wanted a cat – something she could look after and be responsible for.

Soon after Helen died, the man who built my conservatory asked me if I would like a young cat that had been homeless for some time. I took the cat and called her Tilly. As Tilly grew and fattened up, it was amazing to see a beautiful black heart shape develop on her white coat. Maybe she was sent by Helen?

I didn't know where writing this book would lead but I have had experience with the 'closing ranks' system. And so, my advice to anyone going through medical negligence procedures is not to give up. Someday, somebody or some organisation will listen and make a difference.

In the case of my husband, I couldn't believe that the hospital doctor had carried out tests and still sent him home. I was fortunate enough to have a friend who was medically trained and when together we checked through Mike's medical records, she identified certain areas which she found alarming. I contacted a solicitor who specialised in medical negligence claims and she agreed to represent me. The solicitor asked me if I had legal cover on my household insurance policy.

I was sure I hadn't as our household contents premium was minimal but when I checked I was amazed and delighted to find that I had this cover. Without it, I couldn't possibly have jeopardised our home to fund the case. Mike would have gone mad if I had risked our house that we had worked so hard for and lost. I couldn't do that.

But initially I had to fight the insurance company who said I had only 108 days to make a claim, and that my request for legal cover was "out of time"!

Mike had died in the January and I had gone to the solicitors in June. Up until then I hadn't even thought of negligence. I just couldn't get my head round him being seen at hospital, being told there was nothing wrong and then dying exactly a week later.

However, after many months of exchanging letters, the Insurance company finally decided in my favour – another example of why you should never give up.

I have been so very fortunate to have such close and caring friends to help me.

I mentioned earlier the poem we had selected for Helen's funeral service. While sorting out my papers in writing our story, I looked again at the service card and realised how apt that poem is.

* * *

When tomorrow starts without me

When tomorrow starts without me, and I am not there to see,

If the sun should rise and find your eyes, all filled with tears for me,

I know how much you love me, as much as I love you,

And each time you think of me, I know you'll miss me too.

But, when tomorrow starts without me, please try to understand,

That Jesus came and called my name and took me by the hand.

He said my place is ready, in Heaven far above,

And that I have to leave behind all those I dearly love.

But as I turned to walk away, a tear fell from my eye,

For all my life I'd always thought, it wasn't my time to die.

I had so much to live for and so much yet to do

It seems almost impossible that I was leaving you.

I thought of all the yesterdays, the good ones and the bad,

I thought of all the love we shared and all the fun we had.

If I could have stayed for just a little while,

I'd say goodbye and kiss you and maybe see you smile.

But when I fully realise that this could never be,

For emptiness and memories would take the place of me.

And when I thought of worldly things that I would miss come tomorrow,

I thought of you and when I did, my heart was filled with sorrow.

But when I walked through Heaven's gate and felt so much at home,

As God looked down and smiled at me, from his great golden throne,

He said "This is eternity, and all I've promised you

Today you life on earth is past, but here it starts anew.

"I promise no tomorrow, but today will always last,

And since each days the same here, theres no longing for the past"

So, when tomorrow starts without me, don't think we're far apart,

For every time you think of me, I'm right there in your heart.

So, Helli sweetheart, they say time in Heaven is not measured by weeks, months or years, but by the blink of an eye. So one day soon we will all be together again, holding hands – "walking through cornflakes".

Night Night Helli, Love You, God Bless.

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