A year in hospital: The journey to bring Elijah home

Elijah pictured with his tracheostomy

Elijah with his tracheostomy

When Elijah was blue-lighted to Bristol Children’s Hospital on Monday 17th November 2014, I never imagined that he would still be an in-patient 12 months later. If I thought that November was a long month, 2015 felt at times, like a lifetime.

It’s only now, almost a year on from Elijah’s first home visits from hospital, that I am beginning to look back over that experience and appreciate what it was like for both Elijah and for me, as well as the lessons that can be taken away by everyone involved in his treatment and care.

Elijah’s tracheostomy

Almost a month into his hospital stay, Elijah’s condition was such that, on Thursday 11th December 2014, he had a tracheostomy. It was an emotional decision for me to make and only something I have been able to think about more closely very recently.

Everyone involved in Elijah’s care felt a tracheostomy was the best option to improve his oxygen intake and enable him to come off the ventilator. The decision was straightforward in many ways: Elijah could have the tracheostomy or stay ventilated for the rest of his life. There was no other choice.

That being said, I wish that the hospital could have done more to prepare me for what having a tracheostomy would mean for Elijah and his care. I feel that there was very little done to pave the way for the aftermath – both emotional and practical – of such a life-changing procedure. It’s only because I spent every spare minute on my own research during those long hours by Elijah’s hospital bed or in the silence of my hotel room that I had the vaguest idea of what to expect. Still, I could never have imagined the challenges that lay ahead, not because of the tracheostomy itself – that did what was promised – but because of the care requirements of having a tracheostomy.

Out of PICU

On Friday 12th December 2014, Elijah was moved out of the PICU into High Dependency. Very soon it became apparent that this may not herald the beginning of the end of Elijah’s stay in hospital but, in fact, the beginning of a long journey to get him home.

Now, talking about that traumatic time in our lives, I call this period my ‘neurotic mother phase’. Elijah’s tracheostomy had been in for just 24 hours when he was moved from PICU and the level of support around us decreased. I felt helpless. I didn’t know how to hold my boy, what to do with the tracheostomy, what to watch for; every noise sent me into spasms of panic – could he breathe? Did he need help? Was he going to be OK? I hated his tracheostomy, hated everything about it. And I hated that no-one had thought to prepare me.

Elijah couldn’t be left on the ward without the presence of staff who were trained in tracheostomy care, and I soon realised that the hospital had no effective respiratory plan for Elijah. Attention was firmly focused on the tracheostomy but I wanted the staff to appreciate that Elijah has a compromised left lung because of his body shape, and narrow airways because of Apert Syndrome; it was, and still is, essential that we always think about his mouth and nose, as well as the tracheostomy.

Further down the line, we ran into challenges and issues with Elijah's physiotherapy. Prior to the illness that brought Elijah to the hospital in November 2014, we had been working closely with a private physiotherapist but the NHS did not support their recommendations around prophylactic chest management.

These weren’t the only hurdles to overcome.

It’s only now that the real costs of Elijah’s hospital stay have become apparent. Even if we casually price up the expense, I would estimate that Elijah’s year in hospital cost the NHS over £1 million. NHS England I believe paid for Elijah’s hospital stay. Then the drama of training in tracheostomy care became a real burden for Elijah AND I. BCH were prepared to train me in tracheostomy care which they did, but it wasn’t within their capacity to train Elijah’s full team – and yet, without a fully trained team to support him, Elijah couldn’t go home.

I realised quickly that, at this moment in time, there just isn’t any flexibility in how NHS budgets are held and distributed. There’s no space for personalisation or situations out of the ordinary, even if the inability to think or act outside the box is more expensive in the long-run. Elijah’s situation perfectly illustrated why the NHS needs a more joined up approach if it’s going to survive.

While Elijah was critically ill for the first three to four months of his hospital stay, justifying the need for a bed, by March 2015 a lack of tracheostomy-specific training across his wider care team became the only reason he couldn’t come home.

It wasn’t just me who suffered because of this. It’s important to highlight how it affected Elijah. My boy was frustrated, listless, kept within the confines of the hospital while we negotiated our way through the training impasse.

Elijah’s Integrated Personalised Care Budget

Knowing this, it’s perhaps easy to see why I was ecstatic when, on Wednesday 1st April 2015, I received the news that Elijah had finally been given an integrated care budget.

It was in 2009, over 12 months after Elijah’s life-changing brain injury, that I was first offered a care budget. At the time, there was no personalisation – you were given the package on offer and that was it. The focus was on costs, not what the individual needed.

In January 2011, I came across the concept of a personal health budget for Elijah and I set myself the long-term goal of securing this support for my boy. When Elijah was admitted to hospital in June 2011 due to increased seizure activity, I filled my hours reading my power book of that year, Disabled children and the law, which explained the mechanisms that would need to be put in place for a personal health budget to be agreed. By August 2011, the budget was agreed in principal, although it took almost four years before it would finally be signed off.

Between September 2009 and April 2015, I worked with various traditionally commissioned care providers but we never quite managed to find the right fit for Elijah’s needs, especially within the care package limitations.

In terms of Elijah’s care, a turning point came shortly after Elijah had his tracheostomy as I brought in an independent nurse with knowledge of Apert Syndrome who is also involved in the personalisation agenda. She saw the clear need for a personalised health budget and mentioned the Integrated Personalised Care (IPC) Programme, a pilot scheme for which was running locally.

At the time, the NHS had agreed to train three nurses from Elijah’s current care provider in caring for his tracheostomy. Unfortunately, the care provider couldn’t see how they could continue to work with us if we had an IPC because it would mean we could bring in services from other providers. They handed in their notice with immediate effect.

It was a frustrating time. Bristol Children’s Hospital had spent time and money on training, and the trained nurses were no longer working with us as the care provider had walked. Training ground to a halt and we still had no IPC. By March, I was no closer to getting Elijah home.

Finally, on 9th March 2015, the CCG Commissioner retired and the Social Care Commissioner moved. The new Head of Commissioning signed off the IPC budget at long last.

For the first time in a long time, I felt empowered and in control of Elijah’s care. The IPC budget enabled me to have full influence over training, recruitment, behaviour, and taking a person-centred approach to care. I was able to employ people who see Elijah as a person who wants to have and is entitled to a life outside of hospital walls. Around August 2015, I was able to secure Elijah-specific training and found a wonderful training provider – Able to Train, run by a paramedic – that understood how to meet the training needs for Elijah’s team.

Although the CCG gives the IPC budget to a third party, it was, and continues to be, liberating to be the package manager and to be consulted as the decision maker. It is just sad that I had to fight so long and hard to get to this point. My only hope is that we are helping to pave the way for other families with IPC budgets.

In mid-April, I put out an ad for a Paediatric Nurse Manager and recruited the fantastic Debbie. The budget only covers 20 hours a week, but this is enough time for Debbie to make a positive difference for Elijah and me. Her first piece of advice was that we needed to recruit a Paediatric Nurse, which I did in July 2015.

The growing team began to undergo training in the theory and practical elements of Elijah’s care, including postural care. In August 2015, the hospital agreed that Elijah could have three months of home leave and would hopefully be discharged for good within five to six months.

The road to home

From the beginning of September 2015, Elijah was allowed out of hospital for home visits, which was a welcome turning point for all of us. Elijah was still frustrated and unhappy though; his demeanour would change and he would sulk every time it was time to go back to the hospital, but we cherished the hours when he was at home where he belonged.

During this time, my challenge was to recruit a team who could support Elijah with two-to-one care 24/7/365. Debbie and I immersed ourselves in the recruitment process: to cover these hours we needed a team of 18 to provide a full-time service, with 15 individuals with tracheostomy training in backup.

I rose to the challenge with my usual determination but it’s now, with the breathing space of hindsight, that I wonder why the costs and logistics of training Elijah’s team in tracheostomy care became my problem, not something for the CCG to concern itself with, especially when – because of how the IPC is apportioned - it wasn’t possible to pay all of these expenses from Elijah’s budget.

During 2015, Elijah finally received a settlement for the brain injury he suffered when he was little. This settlement wasn’t ring-fenced solely for Elijah’s care but for giving him as ordinary a life as possible. Unfortunately, due to budgetary restrictions and the inflexibility of what can be spent where, it fell to me to fund the tracheostomy training for Elijah’s team using the settlement – a cost that has so far exceeded £200,000. I shudder to think how other families might cope, how we might have coped without Elijah’s settlement. I now face the somewhat daunting task of trying to claim back these expenses.

2016: A pretty good year…

Elijah was finally fully discharged on 24th November 2015, one year and one week after his admission.

While 2016 has had its ups and downs for the world at large, for Elijah and me it’s been a pretty good year so far. It’s incredible to have my boy home. These days, Elijah is surrounded by people who love him and who are passionate about giving him a fulfilled, ordinary life.

This year, we’ve been on holiday together to Blue Stone, where my nature-loving boy was able to enjoy days with the fresh air on his skin and wildlife all around us.

Elijah has had Botox injections to help his high muscle tone, a treatment that has enabled him to move with more ease. His speech and language therapy sessions see him coming on in leaps and bounds. Physiotherapy and postural care are helping his body shape and breathing. We’ve been swimming together on several occasions and, in the summer term, Elijah started back at school for a few days every week. These things offer such a powerful contrast to 2015.

As I look to the future, I hope we can all learn from the past and Elijah’s year in Bristol Children’s Hospital. Maybe there is a way for budgets to become more flexible, for families to be given more information and support, for care to be more personalised. I’m learning too – learning that I need to delegate so that I can spend more quality time with Elijah, learning that I am stronger than I think, and that learning that change is possible if we work together.

Finally, I must mention the Bristol Hilton Hotel which was my sanctuary, my respite, the place that softened the blow of this terrible and draining time in our lives. I lost count of how many nights I stayed in the hotel but I’m grateful for the refuge it provided. I chose the Hilton Hotel as the venue for Elijah’s First International Conference: The Living University of Postural Care on 26th and 27th November 2015 as a thank you for this much-needed hospitality. We’ll be returning there for the second conference next year on 11th and 12th May 2017.

If you or a loved one have Apert syndrome, you can access support, advice, information and an active community through Elijah’s Hope at elijahshopeforapert.org

You can also join our social community at RareConnect.

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