Time for bed…or not

Patient centred commissioning and Isaac have collided this last couple of weeks and predictably we’re locked into an appeals process and system of bureaucracy that is as truncated as it is irritating.

Essentially, Isaac needs a bed.  Isaac’s bed has to be, to a certain extent, all singing all dancing to cope with his positioning needs and provide comfort and support his hoisting etc as his new room is (planned!) to be completed this summer.  Isaac is still in a cot bed in mine and lynsey’s room – he cannot go in a ‘normal’ bed as it will not raise to support his posture, so it’s a big step that has to be right to get his first ‘proper’ bed.

Isaac’s occupational therapist assessed for a bed, and there was one in the catalogue that is ‘approved’ that was suggested, I’ll call it Bed A.  There’s many things about Bed A that meant that it would not be what Isaac would want, not least that it has a steel frame that looks like a hospital bed and has solid sides to a height of around 3ocm that mean that when Isaac is lying down, he cannot see out of the sides of the bed.  Isaac cannot independently move his head when he is lying down in bed, so looks to the side whilst lay on his back – Bed A cuts his field of vision down meaning he’d only see people when they peer over the sides.

We outlined our concerns, and saw a more appropriate bed, Bed B,  at Kidz Up North (a showcase held each year at Event City for equipment for children with disabilities) with clear sides.  We recognised that it comes in around £1000 more than Bed A but were willing to put the extra money in from our own pocket as it would serve Isaac for many years.

Speaking to Isaac’s OT she said that she would check the position of the Commissioning Support Unit regarding us ‘topping up’ from the cost of Bed A cost to Bed B, as some local areas (even 10 miles away) allow this. One of Isaac’s friends at Rainbow House has exactly this ; the Commissioning Support Unit (CSU) for his area allowed his parents to supplement the cost of the standard bed that the CSU would finance so that they could get a high spec bed.

However, Midlands and Lancashire Commissioning Support Unit have declined the request ; saying that Bed A meets Isaac’s needs and that there are many difficulties regarding service contracts and future ownership of the bed if they did allow our suggestion of ‘contributory funding’.  We had submitted additional information about Isaac’s need to see through clear sides of the bed, his need to have a bed that doesn’t remind him of the 220+ days he has spent in hospital in his four years to date, and that we were advocating what we believed to be his wishes.  We have not yet heard back as to which points specifically they did not accept from these observations.

Now, perspective time, I can hear the cries of ‘they should be grateful he gets a bed provided’ and ‘there’s no money in the NHS so it’s how it is’ and probably worse from some folk. Isaac’s care so far has amounted to very close to, if not exceeding a million pounds, a figure I have calculated from conversations with commissioners, and to seem flippant about public funds is as galling to me as it is to everyone.  I will spend the rest of my life thankful, and proud, that we owe Isaac’s life to the NHS.  I love the NHS and would protect it against anything including reckless spending ; Isaac could not have hoped for better care.  So, please understand I am not arguing about ‘NHS being rubbish not providing exactly what he wants’.  What I am arguing however is that Isaac’s voice was not heard.  Our voice, willing to put ourselves £1000 out of pocket was not heard.  The basis of decision making in a CSU is not, no matter what is said, patient centred based on this experience.

Perhaps we should consider ourselves bloody lucky that Bed A was offered? It is after all being offered at a cost of over £1200 to the NHS.  But it is not what Isaac would want.  In the same way if I ask Jake which trainers he wants when we’re out shopping, he will have a view.  Why should a child with disabilities be offered one option, a take-it-or-leave it? Why should the fact that Isaac can’t see out from the one being offered be irrelevant? You see, Isaac’s voice is easy to silence.  If you talk about his physical needs, his medical needs, his care needs then it’s possible you’ll never get round to talking about the things that make him happy or not.  You can design your dialogue that way if you’re a CSU, or you can accidentally let it happen in a non-discriminatory-but-not-anti-discriminatory way. However, if you’d started the dialogue with a list of what makes Isaac happy and content, I guess the first bed would have been taken out the process early on.

Also, like all parents, you choose and pay for items for your children according to your finances, and what you think meets their needs.  I remember the trips to Mama’s and Papa’s before Jake was born looking at cots and equipment and choosing what we thought was best.  Nobody told us ‘you can’t have that’.  It was our money, our choice, our child.

We are offering to pay the difference between Bed A and Bed B.  It has no higher cost to the NHS, whatsoever.  To then be told no by a CSU, we control what you can and can’t have, creates a real sense that Isaac’s wishes are marginalised.  The CSU knows best, apparently.

The issues of servicing and future ownership cannot be insurmountable ; CSU’s for adjacent boroughs allow contributory funding so there must be a work-around.

So, what’s the outcome.  Well, predictably it is the start of what will no doubt be a protracted process of correspondence that loses focus on the very core of the issue ; Isaac wants a bed and whilst he would say thanks very much for your offer to the CSU he’d prefer the bed that mummy and daddy are willing to put extra money towards.

Sorry if I may sound a bit ‘ranty’, it’s not meant that way, i’m just bitterly opposed to anyone imposing a choice on Isaac. I’m sorry if that offends any CSU staff who may read but really, on behalf of Isaac, this is a bigger problem than those sensitivities.

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