Tuesday 28 October 2014

NHS funding - a lightbulb moment

Since I last wrote there have been a couple of developments. The first is that there has been a Child in Need meeting for Tess. Myself and the Head of Learning from Bright Futures School had made sure that key people would be present at the meeting. There included two people from CAMHS and the Educational Psychologist who works with our school. We knew that these professionals would be supportive of our suggestion to consider NHS Continuing Care.

The social worker turned up with her manager (I know not why) and there was some eye-rolling from the social work department when the subject of NHS Continuing Care was brought up. I really don’t understand why they were so resistant, because NHS Continuing Care potentially presents an opportunity for social care to offload some of their financial responsibility….surely that would enable them to earn brownie points with their Grand Masters??

It was eventually decided that the next Child in Need meeting would also be the meeting at which all the documentation that would contribute to the assessment for NHS Continuing Care would be considered. So….we are getting there……slowly.

The following Friday I had a meeting with a different social worker, about the possibility of NHS Continuing Care funding for another pupil at our school who I shall call Ned. Ned’s autism presentation is quite different from Tess’ in that due to his high anxiety and difficulty managing uncertainty, he can be very demand-avoidant and oppositional. This requires very skilled management and robust emotional resilience from staff and carers.

Thankfully, this social worker has a really good handle on how complex Ned’s needs are and immediately saw the potential of applying for NHS Continuing Care (CC) funding. In fact, he quickly saw the whole picture and realised that a successful application for NHS CC could substantially reduce the financial commitment from social care. So he has taken the initiative to discuss Ned’s case with the Complex Case Manager (Children), Associate Designated Nurse, Safeguarding Children from NHS Oldham’s Clinical Commissioning Group. I know - not exactly a snappy title, eh?

So – all good so far……if somewhat slow.

Yesterday I came across the youtube presentation below by Prof Luke Clements.


It’s a social care law lecture on NHS Continuing Heathcare and the law.  It’s split into 6 sections and lasts one hour in total.  Although it covers adults, I understand that the process and legal framework relating to children is very similar.
Prof Clements talks about some benchmark cases including the Leeds case, the Coughlan judgment and the Pointon case.
I had always thought that the threshold for NHS Continuing Care was extremely high, and it does appear that way from the Decision Support Tool.  However, that’s not what the law says.  In the Leeds case, it was established that people with ‘quite modest’ healthcare needs could indeed be funded by the NHS.  In the Coughlan judgment, it was established that Mrs Coughlan needed services ‘of a wholly different category’ that were outside the scope of what social care could be expected to fund.
The Pointon case involved a man with Alzheimers who presented with behaviour that was challenging.  Mrs Pointon was managing her husband’s care but needed respite.  The NHS said that the fact that all Mr Pointon’s needs were being met by his wife and by Care Assistants (who weren’t nurses) meant that there were no health needs.
This case went to the Health Service Ombudsman, who ruled that what was important was what Mr Pointon needed, not what he was getting and (crucially for me) that the specialist skills needed to manage his challenging behaviour were not those that you would expect to be supplied by social care.  Mr Pointon’s challenging behaviour was deemed to constitute an ‘immediate and serious risk’ and was something that required ‘an urgent and skilled response.’
This therefore took Mr Pointon above the ‘Coughlan threshold’ and NHS Continuing Healthcare funding should be provided.
I would argue that there are different autism profiles that involve challenging behaviour that could be deemed ‘an immediate and serious risk’ in need of ‘an urgent and skilled response.’  Ned’s challenging behaviour would fit in this category, in my view.  So would the challenging behaviour of some people with autism and learning difficulties as well as those with autism and extreme sensory sensitivity.  Additionally, the type of service that is required to manage challenging behaviour isn’t the type of service that we would normally expect social care to provide, so this takes the need above the Coughlan threshold and into the realms of NHS Continuing Healthcare funding.
Now what really blew me away about this is that when adults are funded by NHS finance, provision is free at the point of delivery.  In the social care world, services (past a low threshold) are means-tested, which has resulted in many adults who need care homes having to sell their own homes to fund the cost of care.  I recall a discussion about this on facebook recently where the advice was to put the property of a learning disabled person with autism into a Trust so that it could not be sold to fund care.
If that person qualifies for NHS Continuing Healthcare then there is a duty on the NHS to meet need without a person and their carer/s having to worry about selling their home or putting property into a Trust.
Add that to the fact that - if we follow what the law says rather than what the professionals and their Decision Support Tools try to tell us - the threshold for eligibility for NHS Continuing Healthcare is actually fairly low, then we have a situation where thousands of families are eligible for funding and support that they don’t even know is available.
The cogs have turned and the light has come on.....unless I’ve misunderstood what Prof Clements was saying in his youtube lecture?  Do please watch it and feedback in the comments to this blog.

Friday 10 October 2014

Merry Go Round (Children's Continuing Healthcare continues..............)

At the end of my last blogpost on Children’s Continuing Healthcare, I thought I had triumphed when, despite the efforts of the CCG’s NHS Funded Care Team Manager to prevent me from making the referral because I was not from the medical profession, Tess’ GP agreed to make the referral.  I should have stuck with Cynical-Me, not Optimist-Me, as it wasn’t to be.  Slightly more than a month later and I am still in the same position – hoping that the referral will be accepted – except that I have had to take two steps back in order to stand still. 
When the NHS Funded Care Team Manager received the letter from the GP, she promptly wrote back to him (copied to me) letting him know that (as she ‘had already informed me’…..…take that, Thompson!!), she had referred the matter to the Children with Disabilities Team who would make a referral if appropriate.  You already know my views on the Children with Disabilities Team (the words chocolate and teapots spring to mind) so I decided to stop fannying around and go straight to the top.  I wrote to the Chair of the CCG asking him to clarify who could make referrals.
He explained that ‘anyone involved with the client can make the application’.  Good to have that in writing because there’s another referral waiting in the wings.  He signposted me to a different professional – the Complex Needs Children’s Nurse - who apparently will be ‘happy to guide me through the process of assessment eligibility’.  As far as I can see, Tess’ eligibility (outlined in my last blogpost on the subject) has already been established…..but I guess that would just make things too straightforward.
Now then….…look at what the CCG Chair says comes next:
 1. A lead professional would need to co-ordinate all assessments from health, social care and education professionals involved in the delivery of Tess's care currently.
2. A multidisciplinary team (MDT) meeting would then be convened and the NHS decision support tool would be applied using all of the evidence from the assessments gathered. The MDT would then make a recommendation on eligibility.
3. This recommendation along with all of the assessments and documentation used at the MDT meeting would then be presented to the NHS multiagency funding panel at the CCG. The CCG would also require a comprehensive breakdown of what funding was being requested by the MDT.
So – despite the fact that I’ve already used the Decision Support Tool (and Tess has met the criteria) we gotta have 3 more layers of obfuscation and prevarication before Tess can get any NHS funding.  This is for a young person in crisis.
Having just read Mark Neary’s most recent blogpost on ‘An Alternative Social Care Dictionary’, I had a wry smile to myself when I read ‘multiagency funding panel’.  Mark describes panels as ‘the masonic lodge of the (social) care world.’
Well if Tess’ case gets to the masonic lodge and they give the family any hassle, they better look to their laurels because I have it on good authority that it will be quite possible to challenge the legality of said panels.  Still…...am sure that’s some way off.
Place your bets please for how long it will be before Tess’ case gets an audience with the Grand Masters!!