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.