Despair!

What's it like to care for one of the most disabled, medically complex children in Cambridgeshire? 

Firstly it's an honour to care for and love my son. He's an incredible person who has brought a lot into our lives. It's also physically exhausting and very time consuming. Between us and his carers we spend five solid hours a day just getting him up in the morning and putting him to bed at night. He has multiple seizures a day including a couple a day where he chokes on his own secretions. He needs constant monitoring for seizures, suctioning and hypos. Four evenings a week we have a carer here to look after William so I am able to care for my other children. All his meals are meticulously weighed out and blended to go down his feeding tube. 

Nearly two years ago I wrote this post about the respite we were, or rather weren't, receiving. It's so depressing that nearly two years on we have made no progress. In the last 36 months we have had a dismal 6 nights of care. 

I wrote back then of our search for overnight respite. We had explored several options but because of William's level of complexity we had found nothing. As William approached 8 we were encouraged to visit a local respite home for children where our local council sends all disabled children eligible for overnight care. We knew before we went this wouldn't be the place for William and we were right. There were so many things wrong with this place, but primarily their expertise was not in children like William and they had never cared for anyone with his level of need. 

William's respite is paid for by social care and health care because his needs overlap both areas. Decisions on his respite package are therefore made by the County Resourcing Panel, a panel made up of managers and commissioners from within health and social care. A panel made up of people who have never met William or our family and yet who make massive decisions on our life. The following quotes are taken from Cambridgeshire health and social care's websites. They proclaim [their services]:

• empower children and their families to live as full a life as possible enabling them to cope both physically and emotionally 
• minimising and averting crises and maintaining the child’s emotional and social wellbeing 
• through respite enabling other members of the family to take part in activities that may not be suitable for the child with medical needs 
• Disabled Children have the same rights as other children.

The purpose of County Resourcing Panel is supposedly:

• to enable all children and young people with complex needs to access an appropriate range of educational and social care provision
• to consider placement and resourcing issues from an inclusive and wherever possible holistic perspective for children and young people with complex needs and disabilities. 

Doesn't it sound great! And it would be great if any of it were true. 

We have been assessed as being eligible for 24 nights a year overnight respite. Respite at the hospice isn't included in this allocation. We have therefore never received a single night of this allocation. 

Despite all the great promises about empowering families, minimising crises, enabling us to take part in other activities, finding appropriate provision and considering the child and family as a whole, we find ourselves with no respite. We are in a position now where we are being told we need to place William in the local respite home or receive no respite. Despite us stating over and over again that we will never place him there, the panel insist on ploughing forward with commissioning training for staff there. We are being completely ignored, on the verge of a crisis and in great need of a break. 

There is another respite home near here which is privately run but which specialises in children with very complex health needs. It would be perfect for William and the only setting which I believe he would be safe in and yet our requests for him to go here are met with a constant "No". 

We are in an impossible situation...if we want a break we have to place William somewhere we feel is totally unequipped to meet his need, where he wouldn't be safe and I believe his life would be at risk or we have to put up with no respite and continue to struggle and plough on towards a total burnout. 

How does any of this sound like the great promises coming from the decision makers?! 

By far, the worst part of life around William is dealing with these decision makers, going round and round in circles while people communicate badly with each other and us. How is an organisation set up to help and support families like us pushing me towards a stress related breakdown? Where have we gone so wrong?  

Quality of life

Over the last two weeks I’ve been watching, “My baby’s life: Who decides?” on channel 4. It is filmed in Southampton’s paediatric intensive care department and follows the stories of several patients. The program deals with some difficult questions about quality of life and what level of intervention a child should be put through.

As a mum of a profoundly disabled child, we are frequently forced to confront these issues. While William has never, so far, needed an unplanned intensive care admission or to be ventilated (other than for surgery), we can say with a fair amount of certainty that one day we will be in that position. We have had many many discussions over the years about what level of intervention we want when William becomes very poorly. Here and now we make choices every day about the level of medical intervention we use. William has twice daily nebulisers and chest physio, and frequent suction to try and keep his lungs working as well as possible for as long as possible. Our respiratory physio is applying for another piece of equipment to further help William’s lungs. 

Watching the program left me with mixed feelings. On one hand I found it interesting seeing the depth of discussion that goes on amongst the medical team about what is right to do for each child. It’s resssuring to know that drs aren’t making big decisions lightly and are involving a big team in the planning and difficult decisions. It was also reassuring to hear most the drs acknowledge that were it to be their child in the position of some of the children in the show, they would perhaps feels very differently than they did as the child’s dr. 

The point was made that we’re able to keep more and more children alive for longer with various expensive medical interventions, in the hospital and the community, but the NHS and Social care have finite funding. I have seen just in the last few years how things are changing as funding becomes tighter. These are discussions that need to be had or we will just end up saving the lives of children who society can then not afford to support. 

As parents, steve and I have always wanted to prioritise quality of life over quantity of life for William. What this looks like is different for all parents though. We have an idea of what level of medical intervention we will try and when we say enough. None of it is easy to plan for but as a parent you go with your gut and what you feel is right for your child. That might change over time and for it is very fluid and guided by William.

The part of the program that left me with a feeling of unease was when the drs talked about quality of life, and in particular around an older girl who seemed similar to William. There seemed to be an idea that because someone couldn’t eat orally, couldn’t walk, couldn’t talk and had limited cognitive understanding, their life was automatically of a poor quality. 

There’s no denying that William’s life is very different to that of a typical 7 year old. There are many aspects of it that are hard, unpleasant and sad. I would not change him for the world, he is perfect to me, but he does have a broken brain. But, just because william is unable to do most the things every else can do, does that mean his life isn’t worth living? 

William does not experience life like I do. He is profoundly cognitively impaired. As far as we can tell, he has no understanding that he is different. He holds no worries for the future or fears from the past because he is only conscious of the here and now. The awful seizure he had one minute is forgotten the next. While I sit and type, William lies next to me laughing his socks off at who knows what! All he knows is right now he’s happy. I dont know why he’s happy or what’s making him happy, I don’t know if he knows I’m here with him or if he’s enjoying the peace while his sister’s out. Maybe he’s just happy to be in his favourite position - lying down! 

He will never have the opportunity to experience many of the things we consider wonderful in life. He’ll never fall in love, hold his baby in his arms, taste Ben and Jerry’s or look forward with great excitement to a family holiday. But he’ll also never know what it feels like to have his heart broken, to be lied to and let down, to be rejected or to be bullied. 

If I compare my life to William’s, of course it seems unimaginable! How I’d hate to lose my ability to communicate, to not be able to enjoy chocolate or drive myself where I wanted to go. How vulnerable would I feel relying on other people for everything I need! But you can’t assess William’s experience of life in that way because he doesn’t start from where i start from, his view point starts from where he started from. 

I don’t agree with preserving life at all cost because I don’t believe it’s always in that person’s best interests but when it come to complex people like William we absolutely must listen to those closest to them. Only those people with them day in day out have a good understanding of that person’s experience and enjoyment of life. 

When the time comes to make those really awful decisions about William’s future I hope that Steve and I will be listened to as William’s advocates and voice. But I also hope the team around us will sensitively discuss what we are facing and guide us to the right decision. I hope we won’t be blinded by our desire to keep him with us forever, but know what it is the right thing for william. When to give him another chance and when to let him go. 

When "a William" gets “a cold”

We suspected yesterday William might be coming down with something. He was sleepier than usual, pale at times, requiring lots of extra suction and he’d sneezed! By bedtime we were sure he was unwell, he’d sneezed more, so the sats monitor was out (measuring his heart rate and oxygen levels in his blood) and his oxygen was on. We got into bed wondering if he’d sleep well or if we’d be calling an ambulance in a few hours.

Cracking out the oxygen supplies

Overnight he woke us around 4am coughing and his temperature was up. We gave paracetamol suppositories, suctioned him and went back to bed.

By this morning the “cold” was in full swing. Steve did his usual two and a half hour morning routine, upping the strength of his saline neb to help loosen the gunk in his airways. I then took over when Steve left for work, not before emailing our amazing symptom management nurse with a couple of questions about how best to manage this episode. Within the hour she called me back and took a history of what was going on and offered to drop by in the afternoon to check him out. She sent an email round to all of William’s medical team to update them on the situation and on what action she was taking. She suggested we collect a sample of William’s sputum (the gunk he coughs up) to send off for testing and made calls to arrange that. 

Sputum trap!

Shortly after our continuing care nurse called to arrange collection of the sample and talked me through how to collect it as it had been a while since I’d done one. I forget to ask how much will be enough so then call around the symptom management team and Holly ward checking if I’ve collected enough. Meanwhile I’ve moved William downstairs in his chair for another neb and the suctioning is non stop! He still needs his usual morning water and nappy changes on top of six hourly paracetamol suppositories and eight hourly diclofenac suppositories. Moving him round and hoisting him is trickier than usual because not only is he attached to his insulin pump but also the oxygen and sats monitor. Everything is slow!

At midday a health care assistant arrives to collect the sputum sample. After more meds and nappy changes, I give an extra neb and round of chest physio. During the neb his sats really pick up but his breathing rate quickens a lot and he looks to be working harder to breathe. Once lying back down he slowly settles again but his sats are worse!

We finally sit down for lunch at 1.30. I have mine first (I like to go by the same principle as when putting your oxygen mask on in an airplane...sort yourself first or you’ll be no use to others!). Before I start William’s lunch he needs his blood ketones and blood sugar testing as per usual and so far all is good. It takes half an hour to give his lunch and then it’s time for another nappy change! 

Our symptom management nurse arrives at 3pm to assess him. She takes an updated history of how he’s been and listens to his chest with a stethoscope. She thinks there are crackles lower down in his lungs so we agree to start him in his oral antibiotics which we keep at home for a situation such as this. The “cold” has become a chest infection. William’s seizures have been getting worse since lunch and while she’s here he barely stops seizing. She agrees to come back and review him on Friday (if we don’t end up in hospital) and emails the medical team and me a thorough update of her findings. 

At 4pm our Tuesday carer, Daisy, arrives to help out. She sorts William’s afternoon water out while I do a blood glucose as his continuous glucose monitor alerts us he is high (which is typical when you’re ill and a diabetic). We give some extra insulin to help bring it down and Daisy begins the long evening process; more nebs, chest physio, changing, washing, nappy etc etc while continuing to suction frequently.

I make up the antibiotic medicine ready to give and then set about trying to get hold of William’s neurologist to check with her whether I can start William on one of his extra seizure medications. Thankfully she’s in today and calls me back quickly and we have a plan. 

I then finally sit down to spend some time with Eliza while Steve makes tea. We all have tea together but William continues to have lots of seizures throughout the evening. We give him his extra epilepsy medicine and hope it starts to work soon. His sats are a little better this evening thankfully but then his temperature goes up higher than it has all day. At 8pm we give more meds and daisy gets William to bed. Steve inserts William’s new glucose sensor into William’s bum cheek to warm up ready for tomorrow. His insulin pump alarms as his blood sugars have gone very high after tea because of being ill so we do an extra ketone check and give more insulin. 

It’s finally time for us to get to bed but not before Steve sets alarms to move his sats probe in the night and to give more meds to help his temperature. Tomorrow it’ll all start again, but hopefully be a bit less full on!

This isn’t unique to us, this is what “a cold” looks like for many people with complex health needs. This is why we avoid exposing William to germs wherever possible. It can be life threatening to him and completely overtakes our day to day life. 

Despite being a bit worn out this evening after a day of nursing, I am so grateful for all the resources we have now to manage these episodes at home for longer; our symptom management nurse, oxygen, sats monitor, nebuliser, the acheeva, medicines, our awesome carers, grandparents and friends helping with Eliza, suppositories!, blended diet, and a fantastic medical support team in the background if we need to call on them.