Seeking to review and improve Pete's care package

Some of you will already be following my adventures in trying to get NHS Continuing Care for one of the students at Bright Futures School. 

I’m also now going to blog on two more topics – one relating to the process that’s involved in securing an Education, Health and Care Plan and the topic that is the subject of this blogpost, which looks at the process of getting a care plan for Pete, a 35 year old man with Learning Disabilities (LD) changed to more accurately reflect his needs.

 

Pete’s Dad has recently died and his sister, Beth, who has returned to the country to look after Pete, found herself discombobulated and confused by what professionals from health and social care were telling her about what could and couldn’t be provided for him.  There was a care plan in place but support was only available 7 hours per week.  This is for a man with diabetes who is living independently but needs a lot of structure and scaffolding in order to ensure he eats properly, takes care of personal hygiene and makes sure the house is clean and tidy.  Of course those are just the basics and the allocated hours didn’t even cover that……never mind what needs to be in place to enable Pete to have some fun, take part in meaningful activities and be part of his community.

 

Beth said her Dad (who had ailing health himself) had tried for years to get improvements in Pete’s care package but had found it very difficult to get his points across in the face of intransigence and obfuscation by service professionals.

 

That bloody annoys me – I can just imagine the scene, one that is so familiar to me from what’s been described by many other families, when parents and carers are marginalised by professionals………when they don’t know their rights (because no-one tells them) and don’t know what the law says about what their relatives (and often, themselves as carers) are entitled to…..when they are overwhelmed by their caring responsibilities, have difficulty articulating their points because – in terms of power and control – they are at a distinct disadvantage.  It’s a fertile breeding ground for exploitation, manipulation and misdirection and in my experience, professionals in charge of budgets take full advantage of this.

 

Pete has a lot of interests.  His family made this list that they shared with the professionals:

 

To stay where he is, Pete would need:

• Help with a daily routine such as washing, dressing, reminders about showering brushing teeth, taking medication, diabetes control, household tasks, washing, cooking.
• To be given aims for the day.  One or more of the following: visit to church, charity shops, life-long learning centre, swimming, gym, going on his x box (he has one but won't use it alone), going to college, doing pottery, woodwork, gardening (even if this is at the family home - his mums old garden patch)
• Someone who understands his needs, understands his mental health condition, someone he can trust and relate too, someone who will gently push him but not force him, someone he can talk to and open up to. Someone who can have some fun with him. Possibly a separate person to do the cleaning.

The family made a list of their concerns:

Pete worries about: being on his own; being in the dark; having panic attacks; his diet and smoking; doing the right thing.

 

We are concerned about: his mental health - we are worried he will self-harm or worse; his loneliness and his boredom leading to more depression; his health and diet and his smoking; his personal hygiene; his current capacity to live successfully and happily on his own with the lack of support that he has.

 

So – the first meeting we had with the professionals was attended by everyone and their dog.  It was arranged by the Senior Mental Health/LD Nurse and was somewhat difficult because the family needed to spotlight particular instances of poor care, and the care workers were present.  Understandably, there was a lot of defensiveness from the care workers and I’m not sure it was either necessary or ethical for them to have been invited when the chair knew of the nature of some of the issues that were going to be raised. 

 

Surely that sort of thing is for managers to take up, not for discussion in a full meeting?

 

In any case, the family said their piece and we circumvented any further discussion and hostility on quality of care issues by acknowledging that there were differences of opinion and that the family could follow up these issues by making a formal written complaint.

 

Our main purpose was to improve Pete's care package and we were keen to move onto that without getting distracted.  The first point that the family made was that they didn’t have a copy of Pete’s most recent care plan and that they felt they had been excluded from the development of this plan.  Beth had been unable to attend a care plan review meeting because she was dealing with the organisation of her Dad’s funeral.  The response was that convening review meetings was the responsibility of the medical officer responsible for Pete’s care and that it was the medical officer (who wasn’t present at the meeting) who decided to go ahead without family representation. 

 

Grieving sister, about to be made homeless (that's another story), organising Dad's funeral and trying to cope with her learning disabled brother's grief and confusion is unable to attend meeting.  Reschedule meeting?  No - steamroller right ahead, take the opportunity to exclude family member who is asking uncomfortable questions about the care package.

 

Obfuscation No 1……it wasn’t us, Guv’nor!

 

Always a good’un, eh?  Blame someone who isn’t there are can’t defend themselves. 

 

The care plan was circulated during the meeting and the family then made the point that they felt unable to comment on the plan without having time to consider it fully.  A date for another meeting was made to give the family time to consider the plan prior to meeting.

 

Beth passed over written consent from Pete for all information held by health and social care relating to his case to be shared with the family.  We were told that an application would need to be made to the Caldicott Guardian to ensure it was ethical to share Pete’s information.

 

Red herring?  Misdirection?  Obfuscation no 2? I don’t know for sure but I am highly suspicious when it was said in a patronising and condescending tone of voice with slimy insincere fawning protestations of ‘not wanting to put barriers in the family’s way’ and of ‘acting in the interests of good governance and confidentiality’ and ‘in no way an attempt through this process to disengage from the family or to withhold information from them’.  Uriah Heep-esque.

 

I just googled ‘what’s the word for when someone says something that is exactly the opposite of what they mean’ and the university of google tells me:

 

‘Faker, poser, two-faced, disingenuous, hypocrite’

 

All of the above, perhaps?  Ewwwwww………just thinking about it makes my skin crawl.

 

Everything I’ve read on the function of a Caldicott Guardian leads me to believe that their remit is aimed at ensuring appropriate sharing of information between agencies……there is nothing on t’interweb about the remit including sharing with families.

 

Anyway, we bit our collective tongue on that one, smiled sweetly and moved on to the next point.

 

The final part of the meeting focused on the family’s concern about the lack of cleanliness in Pete’s flat.  We were told that care workers ‘can’t make him do anything’ and that it’s not their remit to be cleaning.  Beth observed how readily Pete engages in almost any activity if an invitational communication style is used with him and if the activity is done in the context of an established routine.  She shared her concern that the house was now in need of regular cleaning that she couldn’t oversee because of her need to go back to work, and enquired about Pete using his personal budget to employ cleaners.

 

We were told categorically that domestic cleaning is not funded by social care budgets and that there is case law to support this.  It was clear that there was going to be no movement on that point but we (family and supporters) all shared afterwards our view that logically, if cleaning was part of a person’s identified needs, then surely a social care package should fund it.

 

I subsequently checked with our legal Fairy Godmother (J Stevie B J) and of course found that in fact, the law says the opposite.  In R (JM) vs Isle of Wight, the judge ruled that there is no hierarchy of need and that all eligible needs must be met.

 

Obfuscation No 3.

 

We agreed that the family would go away and look with Pete at the care plan so that they could attend the next meeting ready to feed back his views and wishes.  The meeting was scheduled for a couple of weeks’ time – I’ll report back to base in forthcoming blogposts on our subsequent encounters with Uriah Heep and co.

 

 

Can NHS Continuing Healthcare fund an autism intervention?

So….this process was started in September 2014.  It’s now the end of Jan 2015 and we haven’t got anywhere near the decision-making panel yet.  I’m now involved in two Continuing Healthcare (CHC) cases – Tess and Ned - and there is another – Dominic - lurking on the horizon.

What I have discovered so far is that the gatekeeper to this process is the social worker.  The gig seems to be that the social worker is the professional who decides if CHC should be applied for.  Usually, in cases involving young people with autism who don’t have LD, the possibility of CHC funding never appears on the social worker’s radar.  If you watched Prof Luke Clements’ video presentation (in my last blogpost), you’ll know that this is just plain wrong, and my view that it’s possible that there are thousands of families out there who are eligible for funding and support that they don’t even know is available.

The reason – well, my guess…..is that this is because of how the process that governs eligibility has evolved.  It seems that the NHS has just gone and slapped a load of high threshold criteria onto eligibility without having any regard to what the law says (or deliberately ignoring what the law says??) about eligibility.  Add to that the fact that social working gatekeepers don’t know (and can’t be expected to know, in all fairness) what the law says plus the fact that parents are too busy caring or reaching breaking point to a) have the time to research the law and b) be in a position to challenge the health service……and you have a perfect storm.  A situation has been created where the myth of a high eligibility threshold for CHC is accepted as custom and practice and it just kind of silently and lethally embeds itself into our health and social care psyche.

 

The next step is that the social worker is tasked with gathering evidence to support the case for CHC funding.  The social worker initially completes a document called a CHC checklist.  S/he then beetles off to consult with the health professional responsible for CHC funding in the young person’s Clinical Commissioning Group (CCG).  Those bods have different names in different CCGs and the titles all take up about half a page so I’m not even going to attempt to include one here.

If it’s agreed that the young person meets the criteria (drum roll) then the hard graft of putting together the full CHC assessment – which is done on the ‘Decision Support Tool’ document, is farmed out to a lower level health minion.

If you actually want the assessment to be successful, you (a non-health person….(in my case) from Education!!) have to do all the hard graft yourself but make it look like the lower level health minion has done it. 

This is where we are now in Tess’ case.  A couple of weeks ago we had our first post Child in Need multi-disciplinary team meeting (stay with me…..) to look at the detail of the DST.  Three of us (some may say that equates to a witch’s coven) had already met to have a first stab at putting the meat on the bones and were unanimous in our agreement that Tess met the threshold.

 

The social worker didn’t turn up.  We phoned and found out that she was off sick.  Her office had tried (allegedly) to phone school – they had made one phone call which they said wasn’t answered (in fact, the phone didn’t ring at the time they said they’d phoned).  That was it.  One call to school – no attempt to call the parent involved or any other meeting attendees including two from CAMHS who were travelling a distance. No emails or texts.

We decided to use the time to go ahead and revisit the DST.  Since one of the arguments we were advancing related to the severity of Tess’ challenging behaviour, our minion (she was actually a very nice, helpful minion) had invited a Behaviour Nurse Specialist to the meeting.

Quick ‘time out’ here to explore this ‘challenging behaviour’ thing…..in the DST, it’s the usual definition that is used to describe what happens when a person with LD (and often, autism) can’t cope with something and they become verbally and/or physically aggressive.  What happens with Tess isn’t like that……but we are still making the argument that her response to something upsetting/dysregulating constitutes (as the Health Service Ombudsman in the Pointon case puts it) an ‘immediate and serious risk’ and is something that requires ‘an urgent and skilled response.’

So we’re already off piste with our different take on ‘challenging behaviour’, the first of the DST ‘care domains’.  To meet the ‘severe’ criteria in this domain, a young person must:

‘demonstrate a consistent poor ability to self-regulate behaviours in maintaining personal safety and development, despite specialist health intervention. Likely to require ongoing, intense multi-agency involvement to maintain any infrastructure, and additional high level support from several agencies. Usually requires direct specialist clinical assessment, treatment and review from specialist healthcare professionals in addition to those of frontline service.’

Our description of how Tess presents in order to meet these criteria was as follows:

‘Tess’s avoidant behaviour is demanding due to the pressure that it puts on carers and practitioners for an intensive and skilled response to her extreme levels of anxiety and negative perseveration.  For example she will not currently mix with other pupils at school.  This means that extreme accommodations need to be made in order to enable Tess to feel safe enough to participate in learning.  Such accommodations include having her own classroom, being taught on a 1-1 basis 100% of the time, going home every lunch time and ensuring that no other pupils are around when Tess needs to walk through school.  It also entails an intensive programme of school-based support (social communication and emotional regulation) to help Tess start to devise and implement strategies to overcome these barriers.

When trying to troubleshoot problems with Tess, she constantly identifies further problems instead of focusing on the positives.  This can make supporting her very emotionally draining and carers require a specific skill-set in order to ‘close down’, minimise or distract Tess from her negativity.

Tess’s avoidant behaviour is impairing her personal development on a number of levels. Although she desperately wants friends, she is not currently socially equipped to make and maintain friendships and so is extremely socially isolated.  She becomes downhearted because of this and her emotional wellbeing suffers as a consequence. We know from research that friendships, relationships and social interaction affect mental health, health behaviour, physical health, and mortality risk.

Tess’s withdrawal behaviour presents a challenge to providers due to the need for a highly individualised and specialised service.  Mum reports that xxx CAMHS were unable to help Tess.  She has now been transferred to xxx CAMHS and continues to get most of her support from specialised practitioners at school.  It is not, however, the job of teaching staff to be providing this level and intensity of input to Tess.  The need for constant interventions to address anxiety and emotional wellbeing are acting as barriers to Tess accessing the academic and social curricula at school.’

You might think that that would be sufficient to close the argument…..however, the Behaviour Specialist Nurse couldn’t get his head round the fact that this didn’t fall within the accepted definition of challenging behaviour.  We spent quite some time explaining that we were coming at this differently, that we were ready for the panel to disagree and that Mum is quite prepared to bring a legal challenge against any panel decision not to fund.  Once we had repeated this a few times and also explained our understanding of what the law says about entitlement, the Nurse started to become less defensive and more mellow.  By the time we got to the end of the criteria, it felt like he was secretly cheering us on to have a go and be successful.

So – we are now at the point where we need to collate supporting evidence from various professionals, outline what we want CHC to fund and how much it costs.

What we want is for a parent support and social communication/emotional regulation programme to be put in place to support Mum in the home to dovetail with the social communication programme we have in place at school.  The package we have in mind is, of course, RDI.

I don’t know if an autism intervention has ever been funded by NHS CHC, so it will be interesting to see what happens here.  It could set an important precedent…….watch this space!