Case management: the mags hall story
Zak Hall with Paul Humphries (Ashtons Legal Senior Case Worker)
Our family background
My name is Margaret Hall, Mags to all who know me. I met my husband Gary back in 1996 and 2 years later I fell pregnant with our first child, Ashleigh, who turns 16 in December.
Gary has served in the Royal Navy all of his adult life. His job has taken him all over the world spending the majority of his time away from home, which is, of course the recipe for the perfect relationship. I do like my bed to myself. My career was in childcare. I started out working for a local child-minder and eventually, set up my own business working from home. A job I loved.
When Ashleigh was just a year old we decided to add to our little family. Sadly in the following months we found out that it wasn’t going to be easy for us, a combination of a husband who is rarely home and we found out that I had secondary infertility due to polycystic ovarian syndrome. We went through months of fertility treatment and years of disappointment. But just as we had started to give up hope, one drunken night out seemed to be all we needed and seven years after we first started trying we were finally pregnant again and this time with a little boy, the perfect thing to complete our family.
I adored being pregnant the second time around, I was so much more prepared this time. Well, I thought I was.
The first months sailed by and I loved watching my belly grow without having to worry about what I ate. Feeling those first flutters turn into kicks, getting stronger as time went on. I felt healthier and happier than I had in a long time and had so much to look forward to.
As I neared the last trimester I was roughly the size of a small housing estate and comments of “Ooh, is there only one in there?” and “Cor, you are huge” were commonplace. I had to agree, especially when at pre-natal check ups the midwife commented too. Soon the passing comments became genuine concern and I thought back to Ashleigh’s birth.
My labour with Ashleigh was induced due to her being too lazy to do it herself. At 15 years old not much has changed! My labour progressed very quickly, a bit too quickly and in the final stages she got a little stuck, shoulders dystocia, but with a bit of a position change she was born, all 8lb 10oz of her. The shock of her delivery caused some temperature and breathing difficulties and she was transferred to another hospital for special care. Thankfully all she needed was a night on oxygen and a crash course on breast feeding. But the memory of all that came flooding back as soon as we discovered our little boy may not be so little.
As my belly grew bigger, so too did my concerns. At a scan it was confirmed that the baby was indeed a bit of a whopper and could have been anything up to the 12lb mark. At that point I knew we were in trouble. At my very next meeting with the consultant I started to ask about having an elective caesarean section, unfortunately my fears fell on deaf ears and they tried to reassure me by telling me every delivery is different. That did not help, all I knew was if I struggled to deliver a baby of 8lb 10oz, how on earth was I going to deliver a baby weighing up to 12lbs.
Time and time again I asked for a C-section to anyone I thought may listen. I begged, I cried but nobody was willing to help or offer an alternative. Two to three weeks before my due date I had a very odd experience, where I saw, what looked like hundreds of tiny flies fly past me while I was walking. It kind of freaked me out so I walked to the GP’s surgery where I saw the midwife. She did some checks and referred me to the hospital as she was concerned I had pre-eclampsia. The consultant there monitored me for a few hours and concluded that all was well and sent me home. It was only later we discovered that I did in fact have the markers of pre-eclampsia, enough that I should have been kept in, or even induced at that early stage.
I saw my consultant later that week who, despite my history of precipitate labour, my history of previous shoulder dystocia, the fast labour being, in part due to inducing, my concerns over baby’s size and my expressed wish for a C-section, told me that as there was no evidence of any medical reason for me to have a section, induction of labour would be my only option and that I would be induced sooner rather than later so as to avoid any risk of baby growing too large.
My due date was the 21 st
of April. I was taken in the day after.
So that brings us nicely to the events that changed all of our lives.
Labour and delivery
So despite everything, we had no choice but to put our trust, and our baby’s life, into the hands of the midwives. We had to put our concerns on the back burner and concentrate on the grueling hours ahead. Maybe they were right, maybe every labour is different. Only time would tell.
My husband sat by my bedside while I was given the pessary to induce my labour and for a while all was well. We joked about, we talked about our future with our two children and started to make mental notes of all the little pains.
By lunchtime things had progressed well and I discovered the birthing ball which I was not going to part with for anyone. We watched the London Marathon on the telly and by the time the evening meal was being served up my contractions were in full swing. Nice and gradual in my opinion. However an hour later, an examination showed I wasn’t dilating and we were told I needed a second pessary. We joked about this at first, I said that previously once labour was established it progressed really fast so they’d have to be ready to catch baby as he shot into the world. Again though, our thoughts on the subject seemed unimportant, and in their experience, It would be better if I had a second induction, we reluctantly agreed. That is when someone pressed fast forward.
My contractions were strong and getting closer together and in my mind baby would be making a fast entry into the world and soon. But, because again, I was not dilating I was told it would be some time yet. By 10.00pm they sent my husband home and told me to rest.
From this point on I was in agony and judging by the pain level, I was well into my labour. I asked for pain relief and they gave me Paracetamol, then later, Meptid. Again I was told to rest but that was never going to be possible. When I asked for help again, all I was given were sleeping pills and I was told to get some sleep. By around 11.30pm, I couldn’t stand the pain any longer, so I walked, heavily pregnant, in established labour and dosed up on sleeping pills, to the nurse’s desk for help, all the time convinced that birth was imminent. The midwife tried to walk me back to the bed but my contraction didn’t allow time to move. At no point did anyone get a chair or bed. Instead it took an age to get back to the ward. Once there, the midwife examined me, then she left the room. I had no idea what was happening until she returned with more staff and started wheeling me in my bed to the delivery room.
In the space of an hour I’d gone from 3cm to fully dilated and baby was not waiting for anyone. By midnight on the dot my waters broke but by then, it was evident for all to see, all was not well. They noted meconium in the waters and could barely find baby’s heart rate which was dipping dangerously low and struggling to recover. I struggled to deliver baby’s head and needed help. What I actually needed was an emergency caesarean right then, unfortunately though an instrumental delivery was the option chosen. First I had a ventouse cap fitted, which on the first pull slipped off, cutting baby’s forehead, an episiotomy was performed and forceps tried, however baby’s head was too tightly engaged and they could not lock the paddles, so a second ventouse was tried which helped deliver baby’s head.
At this point history repeated itself and my little boy suffered severe shoulder dystocia. With some pushing from a nurse at the top, some pulling from the doctor at the bottom and a whole lot of grunting from me, our baby boy, Zak David Hall was delivered at 00.56am on the 23 rd
April. A St George’s Day baby.
We had no idea how serious the situation had become until I turned my head to the right to see my newborn son having heart compressions. I couldn’t watch, instead I looked to my husband who’d see everything unfold, waiting for his face to change from one of fear, to smiles and relief. It didn’t. Instead, we watched while they resuscitated our little boy, then put a tube down his throat and rushed him away from us.
The next time we saw Zak, he was in an incubator in the same corner of the SCBU his sister had been in eight years before him.
Only this time things were different. Zak was on a ventilator, a machine mechanically breathing for him, his tummy button, arms and legs were blood stained and bruised from all the needles and they’d shaved his hair so they could put a cannula in his head. He was having seizures already, despite the huge amount of drugs to try and stop them and all we could do was watch, and wait.
For five days we watched as his chest rose and fell. But on that fifth day he did it, he breathed for himself and the clever little man even managed in fresh air, all by himself.
SCBU to claim
The whole time we were in the Special Care Baby Unit we told our story to anyone that was willing to listen. We were angry because we believed that had we been give the C-section we’d pleaded for, Zak would not have gone through a horrific delivery and in all likelihood would be a healthy bouncing baby boy. The one we had waited so long for.
Our story was met with further anger and confusion and we continually heard and used the phrase “Surely it’s the mothers choice!” Well, we thought so too.
As the weeks passed Zak grew stronger. They’d managed to hold back the seizures and all we had to concentrate on was feeding and getting our boy home. However we couldn’t lose the feeling that this was their fault. Neither could my mother-in-law who is a nurse. As we told her our story she knew things didn’t add up. With our consent, she requested a full copy of our medical notes and wrote to the hospital trust outlining our concerns. In response to this we were all invited to a meeting to discuss our concerns and to see if, at this early stage, the hospital were at fault in anyway. They said they would not take responsibility at this point, but if we were to seek legal action, they’d support that decision.
At this time a friend of ours heard about our story and told us theirs. Our stories had many similarities and very similar outcomes for our children. They were already the majority of the way through their own negligence claim and being thoroughly impressed with their solicitor they highly recommended them to us. They told us that we had nothing to lose in making one phone call and later that week I had my first conversation with, soon to be, our solicitor Tom Cook of Ashtons Legal, now of course Ashtons Legal.
As I relayed our story again, Tom listened. He allowed me to speak freely and with confidence. I made it clear I had no idea if we had a genuine claim and that I didn’t want to waste their or my own time and money. Tom reassured me every step of the way and made it clear that once he had received copies of our hospital notes he would call me back and that he too would not waste anyone’s time. He would only take on cases he felt had a strong chance of success and he would let us know why, if our case was not going to be taken further.
I had no idea what to expect. I had never done anything like this, least of all against a giant like the NHS. I seriously thought that no matter how much we knew we were right, the NHS would have the best of the best and we would have no chance against them. Tom reminded us its not about who has the best solicitor, it’s about deciphering right from wrong and enabling us to provide Zak with what he needs for him to live life to the best of his ability, given his limitations. To give back some of the life he should have had, had he not been through what he did. This gave us the confidence we needed to press on.
To begin with there were lots of phone calls, letters and meetings. Everything took a long time but we’d been warned this would be the case. There was a lot of waiting for responses from the affectionately named “other side” but we were kept informed every step of the way.
We learned a lot in the early months. Lots of new terminology and I was grateful we had Mandy Kavanagh, Tom’s Paralegal, to explain it all in my terms. After all, my background was working with pre-schooler’s, not solicitors. I was never made to feel stupid (although I am sure there were times Mandy questioned my sanity), even when on several occasions I had to ask her to tell me in “Mags terms” and then to repeat it.
The whole time we were awaiting a response, we knew there was a lot of work going on in the background. That was made clear by the amount of paperwork we seemed to be collecting and when we got to the point of a face to face meeting, I felt my opinion to be valid and important. I never felt like the “little person”. I felt our team had a genuine commitment to us as a family as well as real belief that we would succeed.
Zak was just four years old when wegot the news we’d been waiting for. By this time his diagnosis and prognosis were quite clear.
I think the doctors knew even as far back as Neo-natal, but all they’d tell us was nobody knows what his future will be! It was even clear to us back then that he was just not quite hitting his very early milestones. It took him four weeks to cry for the first time. Feeding was really hard for him to coordinate and he would vomit after every feed. His hands were always stiff and fisted. He’d make odd cycling movements with his arms and by five weeks he had never looked at our faces or started to make facial expressions.
At four months, out of the blue, a list of diagnoses on a hospital letter said “Evolving Cerebral Palsy” and then we knew.
Gradually the procession of people through our home became less of friends and more of therapists.
Zak’s list of diagnoses grew on a monthly basis and the equipment he needed very quickly outgrew the space we had to put it.
By eight months we saw a return of the seizures and after a frantic emergency admission to hospital, he was diagnosed with West Syndrome, quite a rare and severe form of childhood onset Epilepsy. We spent more of his first year in hospital than we did at home and Ashtons Legal were very supportive and understanding of this fact.
In this year, Zak was diagnosed with the following:
- Hypoxic Ischemic Encephalopathy Grade 3.
- Spastic Quadriplegic Cerebral Palsy of the severest level, GMFCS Level 5.
- West Syndrome, which regressed, and by 18 months evolved to:
- Lennox-Gastaut Syndrome. Yet another severe form of Epilepsy.
Zak is 100% tube fed and suffers with:
- Silent Aspiration.
- He is registered blind due to CVI.
- His hips are slowly coming out of place due to spasticity, as is his spine.
- Mild Scoliosis
Zak is completely non verbal, has a cognitive ability equal to a newborn, and we are still waiting for that first smile.
Equipment and therapy
The amount of equipment Zak needs to maintain postural stability is crazy. He uses a wheelchair, a working chair, a relaxing chair, a standing frame, a sleep system, a changing bed, therapy bench, shower tray, a specialist bed, specialist bath, a therapy wedge, tracking systems with hoists, and all of his therapy equipment we need on a daily basis.
Now imagine not only having to jump through hoops, being told no, fighting and pleading for each item, but also finding the space for it all when we lived in a small mid-terraced ex council house with no scope to extend at all.
Towards the end of our case, a house to fit Zak was top of our list of priorities and we soon found ourselves in a position to look for alternative accommodation.
The hospital had admitted full liability and causation and there was a portion of funds available to us to move, but we needed help.
We live in a small Market Town in the south of the Lake District. Ashleigh goes to high school here and we were not willing to make her leave her school and friends on top of everything else she’d had to go through over the previous four years. Tom understood this and instructed an accommodation expert to come up and help us. It was clear that we were going to struggle to find a suitable property to allow for everything that Zak needed on a ground floor level but there was one house that stood out. It was a beautiful house completed in 2000 but has a really cottagey feel and lent itself well to being extended and adapted just for Zak.
Finally we could start to see light at the end of the tunnel. We’d even got a letter of apology from the Morecambe Bay NHS Trust, which I have laminated.
We knew our case was nearly complete. We’d all but won, though winning was a real mixed emotion. We won in that our case was successful but what did we really win – when we’d lost so much?
Now, we found a whole other world opened to us. We had a house that needed to be made perfect fort Zak. We needed to be able to guess a future for Zak so that we were prepared with everything he needed. We’d soon have money to be able to access a wealth of support, equipment and therapies, a world of special needs that we knew little about. We needed help and guidance not just right there and then, but for as long as we needed, and so Ashtons Legal arranged for us to meet some representatives from case management companies.
It was vital that we met face to face. These people were about to become a massive part of our lives and it was important that we bonded well. We met with a couple of companies but instantly felt that Lynn and Nicola from Northern Case Management were right on our wave length. Professional and skilled in what they do, and just a little bit bonkers and funny just when I need them to be. On a professional level, they are the middle man between the families that they represent and the big wide world, working hard to research, access, support, liaise and get through the never ending red tape. On a personal level, they’ve become our extended family, always ready and willing to fight our corner. We’ve been so lucky to find a team that work so well together, and that we love.
So this brings us to where we are today:
Before we decided to start down this path making a claim, we had no idea what the future would bring. All we knew then was, we were on our own, about to enter a very scary world. One I’d only ever seen from a distance and had never needed to look closely at because it happened to other people. The world of disability was one of fear, the unknown, even playground ridicule. It was a journey with so many pitfalls and there was no one to tell you which turn to take.
Before completion, we were told what Zak needed. We were limited, we had no choice and having no choice was, in part, what led us to this place in the beginning.
NHS funding meant long waits, closed doors and bureaucracy. The professionals that were there to help us continually forced to sit on their hands, often frustrated by the rules and red tape themselves. Time is not something we have, what Zak needs he needs now, because, tomorrow for him is not promised. Yes we can say that about our own lives but for some, like Zak, it is very much a daily fear.
Completing the case, and with the continued support of both our solicitors at Ashtons Legal and our team at Northern Case Management, does not take away that fear. Nor will it change the facts – but, what is has given us a chance::
- A chance to give Zak a childhood.
- A chance to provide him with everything he needs to keep him healthy, strong, alive.
- A chance to let someone else do the worrying so that we can concentrate on being a family.
- A chance to stop the fighting and discover all the amazing things that Zak can do, despite all that life has thrown his way.
Before we went through this whole process, we were very much in the dark, full of questions and what if’s. Completing has opened doors, given us a choice and with our Case Management team on board, we have someone to turn to. They’ve supported our fight for a hydrotherapy pool at home which has given Zak whole new lease of life. It enables him to have exercise and fun while not being continually fastened to chairs and other equipment. They’ve helped us look for, advertise and interview for a carer. Helping me accept that help which was no easy task, but they did it, and now I’d be lost if I didn’t have that support.
We employ my big sister, Ali, who after a full army career turned out to be our angel. Having her help allows me to have time with Ashleigh without interruption, to tidy up, make tea, help Ashleigh with her homework, have a bath or even get out of the house for an hour.
We’ve fallen on our feet with our whole team. We’ve seen them leave but be so committed it didn’t last and they soon came back.
Continuity of care is important. We put a lot of trust and hope in these people, sharing our private lives with them and I know the natural way of things means that some will come and go, but we’ll do our best to hold onto the good ones, Lynn!. You have along with the rest of the team brought years of experience and knowledge in the world of disability. We’ve trusted your advice and it has served us well. Trust is a huge thing for us, we trusted the doctors to care for us and help me deliver our little boy safely. That trust was abused, so to get it back means so much.
We still don’t know what Zak’s future will be. He’s passed the first hurdle by making it past five years old. But what we do know is, we have no regrets. We will be able to give him all we can and we’ll make sure he is safe, fed and happy. That’s my job, I’m his mum.
The whole process has enabled me to take a small step back from the stresses and strains of having a life limited child and allowed me to be just a mum, and for that, I thank you.
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