Down the rabbit hole

It’s nearly 12 weeks since my last isolation blog update. I’d really hoped by now we’d be in a better place, but it’s mostly worse!!!

I’ll start with some good news though! William is no longer on the shielding list. More is now understood about the virus and it’s impact on children, including children like William and it’s not as bad as initially feared, which is good! We will continue to be very cautious though as we all want to avoid it given the uncertainty that still surrounds it. 

A couple of weeks ago Steve had to have emergency surgery to have a pacemaker fitted. In January this year he had a heart monitor fitted after having a long history of episodes of extreme fainting. The episodes, although rare, had become more frequent and Steve was seen by a neurologist and cardiologist to try and get to the bottom of it. Initial investigations showed nothing so the Reveal monitor was fitted inside his chest. A couple of weeks ago he had the first episode since having the device fitted. I was able to scan the device which then sends data straight over to the team at addenbrookes. They were able to see straight away that his heart had stopped for 48 seconds during the faint and so asked us to go straight in. We got Steve into the car but he had another episode so we called for an ambulance. He had a total of three episodes within 90 minutes with his heart stopping for 48s, 20s and 23s respectively. The pacemaker was fitted the next day and Steve came home that night. He has recovered well but is unable to lift anything for a couple more weeks. Hopefully with the pacemaker fitted, when he faints in the future it’ll be just a normal brief episode rather than the scary, not breathing, heart stopping episodes he’s been having!!! 

As all of this unfolded I had to activate my emergency care plan for William. It’s not as dramatic as it sounds! It involves calling one of our carers to come immediately over to take over William’s care. The drama however was that appropriate PPE had still not been sorted for our carers so she had to come to care for William without the appropriate PPE to keep herself safe. 

I flagged this immediately with “the powers that be” and it kicked into action a crazy 48 hours! Emergency fit testing for the specialist masks our carers need was organised and an emergency supply of PPE was donated from other organisations. It was far from ideal but at least we had help to see us through the surgery and recovery period. I’d rather have been able to spend that time concentrating on Steve and the children instead of being consumed by constant emails trying to fix something which should have been resolved weeks ago. 

All was going ok for a week or two with support coming in from school or through our care package, until last week when everything imploded.

Eliza brought a cold home from school which spread through the whole family. I was particularly unwell with it and William and I developed fevers. We needed to isolate and get tested - but there were no tests. Our care package should be able to continue when we are isolating as we have PPE for carers, but our carers also work at William’s school. Education and health/social care don’t have a joined up policy in place for what to do in a unique situation like ours, so while our carers are allowed in, the school TAs aren’t allowed in - but they’re the same people! As school is there primary employer they aren’t allowed in the home at all when we are isolating.

To further complicate matters a positive Covid case at William’s school caused two of William’s carers to need to isolate. 

So we were all ill, I was really ill, Steve couldn’t lift and we had no help. Now, looking after healthy children when you’re ill is rough. Looking after a child as complex as William is near impossible. In my exhaustion and feverish state I lost it! I emailed everyone who might be able to sort things out and I gave it to them straight. We were not coping! 

We were fortunate to have tests organised for us to be carried out at home as a one off and are now awaiting results. But we’ve realised we’ve uncovered a massive massive problem with our emergency planning. Our previously solid plan has been obliterated by Covid. 

So six months on from the start of our lockdown we have no secure ongoing supply of PPE. We have no one commissioned to carry out mask fit testing for carers. We can’t get access to testing when we have symptoms. William gets fevers with every illness and he regularly gets fevers just for fun so we are looking at a LOT of two week isolation periods if testing isn’t sorted. Currently we aren’t allowed any help from school or our carers while we are isolating. So those frequent two week isolation periods leave us alone, potentially unwell ourselves, with Steve trying to work. William needs at least one person with him or available to him all day. Add all the William extras in, two young girls and a house to look after and you have an impossible job for one person. 

So where do we go from here?! We know discussions are being had by important people to try and sort this but we have zero idea of timescales. We’ve realised after this week that keeping us all well and fully functioning has to be our priority until this is sorted out, so we are considering not sending Eliza back to school for the time being to avoid her bringing any more viruses into the home. We just don’t know what to do for the best! It would be far from ideal and not fair on Eliza but being able to care for William well, and therefore keep him alive, has to come first in any schooling decisions.

We are all slowly on the mend. Today’s the first day I haven’t balled my eyes out in several days so that’s another plus!

We are not the only family who have been failed during this pandemic and I am in close contact with a few friends in similar boats. We are staring to put together a joint case to put to those organisations which are failing us in the hope of seeing action before a second lockdown comes. 

 

 

The things you learn

I've been a parent of a medically complex child for nearly ten years now but there are still moments when I stop and think, "How do I know this?! How did I get here?!"

Tonight I had one of those moments...

William spends about 80% of is life lying on his right hand side. When he sits for long periods he tires and his breathing deteriorates. When he lies on his back his tongue falls back and partially obstructs his airway. When he lies on his left his digestive system doesn't work properly! His uncooperative muscles 

https://www.thoughtco.com/anatomy-of-the-stomach-373482

are seemingly too lazy to push the food in his stomach up and out into his small intestine, which when you're a type 1 diabetic isn't ideal! The food just stays in his stomach and his blood sugars crash down as no food is being absorbed. If you look at a diagram of a stomach you can see the exit is on your right hand side, so when William lies on his right gravity helps it work properly!

But now for the first time we think William has a pressure sore on his right ear! So we really need to give him time off his right ear. This is where I was tonight...his first night going to bed, not on his right!

He has his tea in bed so he can't be put on his left until his tea has made its way out of his stomach. But he can't stay on his back all night because his breathing won't manage that long on his back. So the plan is to start the night on his back, let his tea digest a bit, then roll him onto his left when we go to bed. So I begin trying to make him comfortable enough on his back to go to sleep, which is something he never usually does. He needs to have his head raised to reduce reflux, he needs to be lying straight to keep his spine right, he needs his legs together and not frogged to help his hips, and he needs blocks to keep him in place when he coughs or moves. Then I decide to add a little roll behind his neck to tip his head a bit and help open his airway and lift his chin. We leave the sats monitor on him to check he's breathing ok while he's on his back. 

As I stood there looking at him hoping he was comfy I just thought, how do I know all this stuff about how to position someone in such a specific way! How do I know what to put where to get him in the best position for him? How have I learnt how to help his airway stay fully open!

About ten minutes previous I'd changed his insulin pump cannula which often leaves me thinking, "I can't believe I know how to insert a subcut cannula!" 

As a group, parents of medically complex children know how to do a lot of procedures. We usually do them so often we could do them blindfolded! Steve and I can change a gastrostomy button, provide oropharyngeal suction, insert subcut cannulas and CGMS sensors, take a blood sugar, take a blood pressure, get William in AFOs, gaiters and a standing frame, give suppositories, give nebulisers, give chest physiotherapy, collect samples for testing of just about any kind, use a pulse ox, hoist, fix a wheelchair, adjust headrests, give epilepsy rescue meds and provide oxygen. There are other parents who know how to keep their child alive on a ventilator, change a tracheostomy, provide CPR, manage complex pain, catheterise, give parenteral nutrition, and many many other medical procedures!

Most of us never anticipated this would be our lives. We didn't set out to be nurses or drs, and our training is often a half hour lesson at the hospital. And yet here we are, often surprising ourselves with the things we've learnt and regularly wondering, how on earth did I learn to do this! So next time you see us doing something and you find yourself thinking, "I don't think I could do that!" remember that we do it all the time and it still sometimes surprises us that we can! 

(...Turns out 11pm is the limit to back lying - he's just started having apnoeas so time for a roll!)

Isolation update

Three and a half months ago I wrote my first blog as we entered isolation, intending to write regularly throughout our time shielding. As per usual the kids have kept me too busy/worn out to write but I thought it was time for an update, as much of the rest of the country returns to some levels of normal.

Thankfully Steve was furloughed near the start of lockdown which has enabled us to cope! We usually have quite a big care package in place for William which has all had to stop. In term time he would be at school full time, we'd have carers four evenings a week and he'd get 3 nights away every six weeks to give us a longer break. During school holidays I would always have a carer or Nana here to help as it's just not possible to look after the three children by myself.

We've tried to embrace the opportunity to spend this time together. It's been lovely to have Steve with us for so long, to not have to stress about being anywhere on time and to enjoy spending time together just us. We are so thankful that Steve's job is secure, we have a garden space and a house well adapted to William's needs. There's been plenty of moments of stress and tearing our hair out - mostly involving getting Eliza to do school work, getting Eliza to tidy up and Cecily's love of screaming! We are also knackered by the end of every day! We rarely finish getting the children all settled and the house tidied before 9pm and then there's often something else to get on with. Thankfully all the children mostly sleep well so we get a rest overnight!

Things are now starting to change though. Steve is now on part time furlough so needs to find time to work. William's professionals have started to book in some more phone or video calls. Lots of Eliza's class are now back in school and more work is being set. We still have a month of shielding to go and we have no idea when we'll be able to get carers back in.

As many people's lives return to some levels of normality in some areas, families like ours are struggling on with no usable care package. We have no idea what is going to come next in this pandemic. Worst case scenario is a second wave and we have to prepare that we will be the last released from lockdown and the first to be locked back down. We were keen to get some care back in place while we can to give us a bit of a breather in case a second lockdown comes but it's not going to be straight forward!

There are government guidelines in place that all carers should wear PPE when providing care in homes. However, where a carer is carrying out an Aerosol Generating Procedure (AGP) they need to wear full level PPE consisting of a fit tested mask, gown, gloves and eye protection. One of William's medical needs is on this list. Last week we began the process of trying to obtain PPE, but it soon became clear that this wasn't going to be easy! Firstly we were told that Public Health England were reviewing the procedures considered AGPs, so they might not apply to William. We are waiting on a decision on this which will indicate which level of PPE our carers would need. Presuming the worst case scenario, that we need full PPE, we then need to wait to find out who will carry out the fit testing assessment on the carers for their masks, who will train them in putting on and taking off their PPE, and of course - who will pay for it! From experience, these things are never quickly solved so we have no idea when we might be able to access home care again. Furthermore, a lot of the same issues will apply to school, so we have no idea if William will be able to return to school in September or if it will take longer to get things in place. There are many many unknowns so it's just impossible to plan more than a few days at a time.

William needs someone to do everything for him, he needs someone with him all the time. He needs dressing twice a day, nappy changes five+ times a day, feeding three times a day, all his feeds making up, he needs playing with because he can't move independently or see, he needs a full physio programme, he needs moving regularly throughout the day because he can't stretch his legs, roll over, or shuffle off an uncomfortable spot. Every time he coughs (which is a lot) he gets into a bad position and needs readjusting. He needs supporting through a seizure several times a day, he needs his airway clearing many times a day, he needs nebs and chest physio every day, and he needs all this kit cleaned and maintained. Bear in mind, he weighs around six stone and has problems with muscle tightness so anything involving moving him is physically really hard work and time consuming. Changing a nappy on William is nothing like changing one on a baby!

It definitely feels a bit like families like ours have been a bit forgotten in several ways. If we didn't have a big mess over PPE at the start of Covid, maybe it could have been sorted by now so we could have carers. If everyone had followed the rules and exercised more common sense, maybe we'd have fewer cases by now. My hopes of avoiding a second wave are really slim. I often wonder how many of the people not following the rules have nothing much to lose. Maybe they're young and healthy with no one to worry about who is at risk. Meanwhile we have strictly followed the rules but will pay the price of others not doing so by being locked down longer, being without care and respite for longer, and not being able to meet all of William's needs.

The challenges faced by families with additional needs children varies so much, and by no means does our experience reflect that of other families. But it is clear that some of the most medically complex and fragile children, whose lives rely on AGPs, have been left with no practical support for their children.

Who to treat?

In the last few days I've seen quite a few people sharing a link to this petition.

I am certainly no expert in any of this but I just wanted to share what I know and hopefully alleviate some extra worries that we really don't need at this time.

I have a child with a life limiting condition. He has a palliative care consultant and a palliative care plan. Part of his case management is provided by the Symptom Management nursing team at our local hospice where he receives regular respite. He carries on him an Advanced Care Plan and Respect document detailing what we want to happen in the worst case scenario. I have had countless conversations over the course of his life time about what levels of intervention we want for him as and when he gets more unwell.

Decisions around the level of care a person should receive are not decided based upon a person's disability. Nor are they made by a single person. So when I read the petition it didn't sit right with me, because it goes against everything I've been shown and learnt about treatment options and intensive care for disabled people.

I have no idea who started the petition or what article they say they read, so I did my own research. I checked the NICE website initially where I found guidance for those making decisions around critical care. Their page refers to something called the Clinical Frailty Score which is used in assessing what might be the best course of action for a patient over 65, where the ageing process may have started to make a significant impact on their quality of life and ability to recover from a major trauma or illness. There seemed to have initially been some concern around this as someone young with a long standing but stable disability such as Cerebral Palsy would score highly despite being in good health. The guidance has since been updated to stress that this should scoring system only be used in those over 65 with no long standing stable disability.

I then did some general googling and the only other thing I found was this page advising how to support those with learning disabilities and their families. I found nothing about not providing care to people simply on the basis of them having a learning disability or stable physical disability.

It is very possible/likely that at some point soon we will run out of intensive care beds to treat everyone needing one, and somehow medics will then have to decide who to treat. I don't believe this will be done based on disability. I do however think that if William were to catch the virus and become severely ill, he may not be front of the line for intensive care treatment (presuming paediatric services are also overrun or are being used for adults).

Importantly though, this is not because he is disabled. It's not even because he has a very profound level of physical and cognitive disability. Whenever anyone is given intensive care, thought is always given as to whether that is in their best interests. Being ventilated and put on life support is a really tough thing for someone to go through and there is never a guarantee the person will recover. When we discuss our wishes for William we look closely at his quality of life now. We then consider:

• What we are likely to achieve with a certain treatment option and at what costs might that come at?
• If we treat in this way are we going to bring him back to the same quality of life he's at now or will it be worse.
• How much worse?
• Is it so much worse that there is no quality of life left?

We discuss what quality of life looks like to someone like William because it's obviously totally different to mine and yours! William's quality of life is something of a tightrope. Right here and now I believe William has a quality of life worth living. We constantly grapple with what changes could occur that would knock him off that tightrope. Take his seizures for example, he has many a day, some small and some big and nasty. But I have some kind of internal meter that knows when his seizure level is ok and when it's crossed the line and is tipping that balance of quality of life. When we reach that point we take action and so far we've been able to tip it back just enough to maintain his quality of life at an acceptable level.

As we face the risk this virus brings to him, we have started discussions about what level of care we want for him. In a worst case scenario that choice won't be ours because there won't be enough ventilators and William won't be high priority for one. Again, not because he's disabled, but because his level of disability has led to a very complex medical picture for him. He has borderline respiratory failure and his day to day respiratory needs are tricky to manage. The chances of getting him off a ventilator are lower than most people's and the chances of getting him back to the same baseline, or quality of life, as he has now are even slimmer. His baseline is already way below most people's.

We have some things in our favour though! William has never needed ventilating for a chest infection before (miraculously!) and he doesn't have a scoliosis (curvature of the spine - common in people like him) - both things that are unhelpful when facing a horrible respiratory virus. We are keeping our expectations open to whatever could happen knowing whatever happens God is in control.

So if you're a parent of a healthy (or mostly healthy) child with a learning disability I want to encourage you that treatment is never decided based on the simple fact of whether the child has a learning difficulty or disability. There's a much bigger conversation that goes on taking into account many factors. These are absolutely unprecedented times and it seems likely that medics will have to make incredibly difficult choices about who to treat in what way, and we can't know for sure where that cut off will have to be.

Isolation

If you'd said to us at Christmas where we'd be at today I don't think any of us would have believed it.

In the space of a few weeks so much has changed.

Coronavirus was on my radar and worrying me a little bit before it was on most people's. Any respiratory virus is an issue for William and the reports coming from China weren't good. I then started closely following what was happening in Italy via Twitter and I knew we were in trouble. We started socially distancing nearly two weeks ago, gradually reducing what we were doing to protect William. We then withdrew William from school from Monday and Eliza the following day as the government's response ramped up. 

Along with many other families like ours we have gone into strict isolation for three reasons:

1. We don't want William to get it. There's virtually no evidence on what his chances would be of surviving it. There's a good chance it would kill him and a higher chance he'd need intensive care treatment. It's very likely we won't have enough ICU beds to treat everyone and we will have to prioritise who to treat. William will not be high up on the list. I imagine the only thing in his favour is he's a child.
2. We don't want William to catch anything that might risk landing him in hospital (which is not uncommon for him with any respiratory illness). We need to keep him away and protected and avoid the risk of him needing any intensive care. 
3. We need to prevent Steve and I from getting it. William needs complex medical care throughout the day and parts of the night. There's only a small number of people able to provide that. If one of us caught it and went into isolation within part of the house it would be impossible for the other one of us to care for the children and the one of us who was ill. 

We went into this knowing we had at least three months of isolation ahead, trying to care for three very different children with very different needs while Steve tries to work full time from home. It's looking increasingly likely this will be for longer than three months. We are trying to make difficult decisions about care and respite and balancing our need for help and a break with the need to keep William safe.

We're on day 3 now of official isolation. I want to try and blog my way through it as a record of this unprecedented time. Some days I'm hoping it'll be funny. Some days it'll hopefully give you an insight into isolating as a family around a medically complex child. Some days it'll be reflective and thoughtful. Some days it'll just be something for me to do!

So a summary of our first three days....we kicked off day 1 with Eliza upset that Cecily was drinking from her bottle. She told me Cecily would get her germs. What germs are they then, I asked. Coronavirus of course. She quickly back tracked when I told her she'd better move out then!

Thankfully Eliza is currently thrilled to have enrolled at a "new school"! She insists on calling me "teacher" despite me telling her "mum" will suffice. She has created peg pictures for the three of them and insists on hanging coats on the shoe cupboard (despite us having perfectly good coat hooks in the cupboard).

We're keeping it all quite casual trying to make sure William gets some physio each day and Eliza does something learning-y and not just watch Shimmer and Shine all day long. This has been relatively easy while her enthusiasm is high! I'm trying to enforce "playtime" each day where the girls go out in the garden for a while so me and William can enjoy some peace and quiet! Some warmer weather would be very welcome!

Some lovely teacher friends have sent me some ideas and resources and I've joined a couple of websites for free print outs which is providing plenty for Eliza to do. I also joined a bunch of covid homeschooling facebook groups in my enthusiasm but have quickly unfollowed them all because it's information overload. Also, most people aren't try to homeschool while caring for a child like William, so I'm just going with the flow!

Tomorrow we're hoping to set up a snack shop to stop Eliza eating the entire snack contents of the house! (Why do they want endless snacks but never want to eat their actual meals?!)

If you are not in the vulnerable category and are able to get out and about and are local then please shout if you're able to help with our food shopping. Hopefully once the shops settle down it'll be much easier to shop online again. If you want to drop us a letter or chocolate bar through the door feel free! It's lovely to have contact with people that isn't just online. I'll post specific prayer requests as we go for those who want to be praying for us.

For now here's some highlights of our first three days! Obviously this is the internet so I am only posting the photos that make it look like we've had the most wonderful three days ever and the children have all been absolute angels. I decided it was best to leave out details of the 30 nappies we've changed in that time, the horrendous nappy rash C has, C's "delightful" new way of communicating to us (more on that to come), when C got her head stuck in William's chair, when we discovered C wondering around with an unlidded navy felt tip pen.... and the 5 million hours I've spent trying to put William's gaiters on!

 

Cosmic yoga!

Sensory story time 

School corner!

We're (not) all going on a Summer Holiday...

One of the things you'll often hear parents of medically fragile children saying is, "I can't wait for the summer and for the winter bugs to end!" When you have a child who's vulnerable to respiratory infections every winter feels like another challenge to be survived, so it's always a relief to get to the summer months in anticipation of a run of good health.

This summer William had other ideas! Since June he's had episodes of unexplained fever and episodes of slower absorption in his digestive system. We've been to and fro from Holly ward and had blood tests and X-rays but not really found anything concrete. We wondered whether there had been degeneration in William's brain causing his internal temperature control system to malfunction more giving him false fevers, but we were also seeing small increases in his infection markers which complicated the picture.

Mid-August William had a particularly severe fever episode which he reacted badly to. We woke at 5am and could hear his breathing wasn't good. By 7am we had an ambulance out as the fever was causing back to back seizures and vomiting, which are never a good combination! Trying to protect his airway from aspirating vomit during seizures is not fun. However once we got to hospital and the meds had kicked in he quickly stabilised and went back to normal as if nothing had ever happened! We were even more puzzled about what was going on.

Then, of course, on the day we were meant to go on holiday a few weeks ago, it all came to a head! William's gut decided to stop and not absorb his breakfast which, when you're a Type 1 diabetic having had your insulin creates problems. We had to deal with his most severe hypo yet and then take a trip up to Holly ward because his tummy was firm and swollen. Following multiple x-rays, a transfer to Addenbrookes for a surgical review, IV fluids and gut rest, it was decided that William had an infection somewhere in his body that had caused a septic ileus. He was started on IV antibiotics to treat the infection. Meanwhile all our family had headed off to Kent on holiday with Eliza to make the most of our holiday home.

By the Sunday evening William was tolerating some milk feeds into his tummy again so after much discussion with the Drs we decided to transfer him onto oral antibiotics and head off to Kent on Monday morning. We'd researched the local hospital to where we were going so were prepared. It has always been a priority of ours to have holidays with William and to try and enjoy family days out, so although William wasn't fully recovered we took the difficult decision to go.

We arrived in Kent on Monday afternoon and were really pleased to be there. Unfortunately though by Tuesday the strong antibiotics William was on began to take their toll and he had horrendous diarrhoea. He then caught a cold from Cecily which she'd picked up at the hospitals. Between the cold and poop he was not in a good way, we couldn't get him off his bed, never mind take him out, so Steve and I took it in turns to stay in with him. It was not how we'd anticipated our long awaited holiday panning out.

By the time we went home at the end of the week William was slightly better so we managed to stop off at the seaside on the way home for his only outing of the holiday.

It was a pretty horrendous week! I'm not sure how we kept William out of hospital! But we somehow managed to squeeze in some good bits as you can see from the photos.

Once back home we followed up with our consultant who was concerned about the level of diarrhoea William was experiencing so decided to test him for C-diff, a really nasty tummy bug that can be triggered by antibiotics. Thankfully the results came back clear a few days later but rather unexpectedly the tests discovered William had a parasitic infection instead called Cryptosporidium. This is a relatively rare infection usually picked up from contaminated water sources so where William had got it from was a total mystery! It's a reportable illness so we had to inform environmental health about the circumstances around William and how he could have caught it.

It's taken William a month to fully recover. He wouldn't absorb his usual food for a few weeks but thankfully we have now got him back onto his normal diet. He wasn't allowed to return to school until last week and we had to miss out on our respite at the hospice because of infection control. To add to the fun, Steve caught the Crypto from William! It's a particularly hardy parasite, resistant to bleach, so we had to go serious on our infection control to ensure no one else in the family caught it.

It's been a crazy few weeks! We were absolutely gutted to have lost our holiday but such is life with a poorly child. Disappointment becomes second nature and you just have to make the most out of it.

We are hoping that the fevers he'd been experiencing since June could be part of the crypto infection but no one knows for sure if it is possible for it have 'rumbled' along for that amount of time. We are now just watching and waiting to see if these fevers continue. William was due to have a surgery last year but due to his poor health it was cancelled several times. We have now made the decision to not go ahead with the operation. Obviously it is difficult to accept that William is becoming more unstable but we are glad to not have to worry of surgery on the horizon.

We're glad to be back in the flow of normal everyday life, something you don't take for granted when you're used to interruptions of hospital stays and illness.

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?