Justice Together

Re-posted here from 'Bringing Us Together'

Thomas Rawnsley, a young man with autism, Down’s syndrome and learning difficulties, who was under the care of his local authority, died on Wednesday this week (4/2/15). Thomas had been placed by the Court of Protection in a specialist facility against his wishes and against the wishes of his family.

His family had been fighting for 3 years to get him back home. During this time, Thomas suffered abuse at the hands of care staff. His story, documented here and here, is a terrible indictment of our care system and how we treat people who have learning difficulties (LD) and are vulnerable.

It is not the first time this sort of thing has happened. You can read here about the sad death of Connor Sparrowhawk and here of Nico Reed, both in specialist care facilities. Despite a commitment from the government in Transforming Care: A national response Winterbourne View Hospital to ensure that all young people with LD are moved out of these facilities and into appropriate placements in their communities by June 2014, there are currently still 2,600 young people with LD in specialist facilities.  The LB Bill is looking to introduce a Private Member’s Bill so that the law helps our young people to stay in their local community.

However, many families have experienced, are experiencing and will experience similar in the future.  So as the wheels of change move slowly, ever-pausing, in their journey to a world where our children and young people are an integral part of our community, Bringing Us Together and friends wanted to try to do something to help

Justice Together 

We know that there are many people and organisations out there with knowledge, experience and advice to offer to families in this kind of crisis, but often the family do not know they exist, so their support comes too late or not at all.

Bringing Us Together and friends want to produce a database of all the support available to families who need help when they are in crisis; whether their child is detained against their will and the will of their families, or if they are involved in a safeguarding incident with a provider/educational provision or if the families themselves are victims of the system.

Short Term Goal:

To produce and provide a database of ALL support available to families.

Bringing Us Together will co-ordinate Justice Together.

Long Term Goal:

To provide as much support as possible to families of children and young people with disabilities who are in crisis

Where possible, to provide resources and support to stop the progression of crises that lead to any form of deprivation of liberty

To raise public awareness of the issues relating to any form of deprivation of liberty and other safeguarding issues for people with disabilities

We will use the knowledge and information to raise awareness with families.

Informed parents will be able to make informed choices and decisions.

Outcomes

Children and young people with disabilities will not die following any kind of detention in state care

Children and young people with disabilities will not be detained against their wishes/the wishes of their families in inappropriate state funded facilities

Good quality community placements will be found for children and young people with disabilities who are at risk of any form of detention or are in crisis

Children and young people with disabilities will be acknowledged as “reliable” witnesses

How will it work?

Bringing Us Together will co-ordinate Justice Together.

In time, and with funding, there will be regional Justice Together Co-ordinators.

Regional Justice Together Co-ordinators will put together and maintain databases of people in their region with skills and knowledge, who are willing to assist Justice Together on a voluntary basis

Regional Justice Together Co-ordinators will put together a list of good quality providers in their region

Regional Justice Together Co-ordinators will deploy their team of appropriately skilled and knowledgeable volunteers who can quickly come together to provide advice, guidance, advocacy, emotional and practical support to the family in crisis

For families heading towards crisis, the same will be available but on a smaller and less intensive scale

How can you help?

Can you offer support to a family? If so, what experience do you have and which local authority areas can you offer the support in?

Do you have experience with fundraising or grant writing? We would like key people offering support (e.g. Regional Co-ordinators) to be recompensed, and we are seeking to cover all volunteer-related expenses, so we need funds to do that.

Do you use social media or do you blog? We need people who can share news and information. We need to make people aware of Justice Together.

Do you know the providers in your local area?

Do you have expertise in a specific area (such as advocacy, psychology, social work, health, etc) that you are willing to share with others?

Do you have technical expertise to offer for databases, SQL, etc.

Ideas and suggestions

What would make Justice Together work in your area?

What else do you think we need?

Do you know of others doing this on a local level who would be happy to get involved?

Can you share this with any friends or colleagues who may want to go on the database?

Can you recommend a local or national organisation that provides support to families?

We don’t want to replicate any good work happening in local areas, we just want to ensure that parents know about and can access that help before it is too late.

Expressions of Interest and Suggestions:

In February, we are asking for feedback and expressions of interest. If you would like to be involved with Justice Together or if you have a suggestion, please complete this form at the end of the linked page by 28 February 2015.

Justice for Thomas

Yesterday (4/2/15), Thomas Rawnsley’s family had to make the agonising decision to consent to his life support machine being switched off. 

It’s difficult to imagine what any parent would feel at this time but imagine too their preceding two years of Kafka-esque hell……..Mum Paula and her wider family have had to contend with watching powerlessly as their precious Thomas was shunted like a piece of meat between different care (care??) placements.  None of the placements could meet his needs and during his stay in one of them, he suffered abuse by staff.  One member of staff received a suspended sentence in February 2014 for this abuse.

Thomas entered state care in an ATU in October 2013 as a result of a section that came about because the staff at the bungalow in his supported living facility claimed that his ‘mistrust’ of them was a threat to them. 

When the section was lifted, he was detained under an order from the Court of Protection (Protection??.......really?  Protecting who?  Not Thomas……) The family had no access to legal aid and no way of meeting the costs of legal representation to challenge the CoP order.  Paula was (and still is) gagged by the CoP from reporting any details relating to his care.

When I read between the lines, my translation of what the staff in the ATU meant  when they described Thomas' 'mistrust' of them as a threat is: ‘he has autism, Downs and learning difficulties……..he’s sooo difficult!  We can’t get him to do what we want and his ‘challenging behaviour’ is too much for us!!’

Ok so anyone who really takes the time to understand people with complex needs knows that ‘challenging behaviour’ is usually a result of the environment they are in – sensory environment, physical environment and interpersonal environment.  That last one is the lynchpin in my view.  Trusting relationships are so powerful and so fundamental to our human existence yet this aspect of the environment is usually the one that is ignored.  Ignored because of ignorance, indifference or convenience? 

Instead of care built around trusting relationships we get the use of behaviourist principles, physical restraint and the chemical cosh.  There’s only one one-way relationship there and it’s about the staff being in control. It’s all about compliance and conformity.

There is so much indifference around meeting complex needs amongst many of those working in the industry.  And my god, it is an industry: it sure makes fat cats out of all those care home directors and provides a reliable cash cow for charity providers…..and all this feathering of the corporate and charitable nest is at the expense of you and me the taxpayer.

There are some good care homes and facilities of course, but we have too much evidence now that this is the exception rather than the rule……certainly for the larger institutions.  Connor Sparrowhawk, Winterbourne View, Nico Reed.  Eden Evans, Jack Beres, Tianze Ni.  Josh Wills, Chris McCarrick, Stephen Martinez.  Steven Neary, Claire Dyer.

Trying to ‘get’ people with complex needs to do something is the opposite of what needs to happen.  A ‘getting’ communication style and way of interacting is going to lead to explosions and dysregulation because of the difficulty people with complex needs have with demands being placed on them.  Conversely, if there is an invitational communication and interaction style embedded within a trusting relationship and a support plan built around the person’s preferences, you have the person’s own intrinsic motivation that fuels engagement……and the ‘challenging behaviour’ is minimised.

Are workers in care homes and ATUs given training and support to help them understand and implement this kind of approach?  Are they paid at a rate that recognizes and develops these competencies?  You know the answer.

The average cost of a placement in an ATU is £3,500 per person per week.  Yes, you read that correctly. Yet the top brass big cheese (rich) directors in their board rooms and executive offices on their executive salaries can’t manage to pay the care and support staff a wage that is reflective of the competencies needed to provide quality care and support to people who need such placements.

So people who are in crisis go into a placement where the sensory, physical and interpersonal environments make ‘challenging behaviour’ a fait accompli.  And where are the commissioners, the CQC, the Winterbourne View JIPs and Concordats, the National Audit Office reports, the charities that claim to represent people with complex needs in all this? The bodies that are supposed to be safeguarding, scrutinizing and regulating are part of the problem.....they bluff and bluster and wring their hands and nothing changes.  And as for the Court of Protection….ignoring the views of families who know their dudes best and slapping gagging orders on anyone who dares to tell the truth about what is happening to their kinfolk.

Over the coming days and weeks we will find out more about the uncertainties surrounding the events that led up to Thomas’ death.  For now we need to put our energy into making sure Paula and her family get as much support as possible – emotional, financial, legal, campaigning…..whatever they need.

It may be that an inquest is needed.  Legal aid isn’t available for families to access legal representation at inquests.  But of course the local authority responsible for Thomas’ care have access to their own funds (courtesy of yours and my taxes) to employ the best solicitors and barristers.  Where’s the justice in that?

A fund has been set up to help Paula and her family.  Please donate and share the link to the fund (http://www.gofundme.com/laewnk) as much as possible – legal representation for an inquest will cost about £20K.

We need to make sure the family gets Justice for Thomas. 

Justice for all the dudes.

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!

 

 

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.

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!!

 

NHS Continuing Care. Door 1 (referral).....Alohomora!

Regular followers of the Food for Thought blog will remember that I started blogging about NHS Continuing Care here by looking at what this funding is for and how it might relate to young people with autism.  I noted that as far as I know, the most common (and successful) referrals for NHS Continuing Care in relation to young people with autism are where the young person’s primary needs arise from their learning disability (LD).

 

I went on to make the case that some young people with autism but without LD should also meet the criteria for NHS Continuing Care because according to the national framework, NHS Continuing Care for children is defined as ‘support provided for children and young people under 18 who need a tailored package of care because of their disability, an accident or illness.’ 

In my next blogpost on the subject, I described why I felt that Tess should be eligible for NHS Continuing Care funding, and what happened when I made initial enquiries about making a referral.

This is what has happened since:

I found out that for Tess, we need to make an application to a neighbouring Clinical Commissioning Group (CCG - the bods who hold the money for NHS Continuing Care), because although she lives in Oldham, her GP is in a neighbouring authority.  I could almost hear an audible sigh of cyber-relief through the email in which the Oldham Commissioner told me this. 

So, off I trotted to the next CCG.  When I eventually found the right person to talk to, I filled her in on the background of Tess’ case including the difficulties the family had been experiencing in accessing any kind of support from statutory services to date (notably – social care and CAMHS).

My aim in phoning had been just to get the name and email address of the person to whom I should make the referral.  Instead, I was promptly engaged in a conversation about why this case should be re-directed and dealt with as part of the Education, Health and Care Plan process.  The Manger told me that she would get in touch with Oldham’s Children with Disabilities Team to see how best this could be taken further.  At this point, my heart sunk.  Oldham’s Children with Disabilities Team have been nothing but an obstacle to this family and I feared this would result in a dead end.  I was also told that any referral into NHS Continuing Care ‘has’ to be made by a health worker.  I knew that the national guidance said no such thing but I could see I was going to be flogging a dead horse if I continued to question why I (as an education professional and arguably the person most familiar with the family and their needs) couldn’t make the referral.  So I thanked the lady for her help and as soon as I came off the phone, I made a Freedom of Information Act request for a written copy of the process relating to referrals for NHS Continuing Care.

I left it for a week and then emailed the Manger to ask for an update on progress.  She told me that she had left everything in the hands of Oldham’s Children with Disabilities Team. 

Time for Plan B!  After discussing it with Dixon, I decided to write to Tess’ GP to ask him to make the referral.  If that didn’t work, I would formally challenge the notion that only a 'health' person could make a referral.

I thought that the best way to show the GP that a referral was necessary and justified was to actually use the assessment form to demonstrate that Tess met the criteria.

Here is a copy of the letter that I sent to Tess’ GP:

Dear Dr X

I recently wrote to you with a request that you consider making a referral to CAMHS for Tess.  The referral has been accepted – thank you for your support.

I have been trying to refer Tess for Children’s Continuing Care funding but have come up against an obstacle, as I’m told that only health professionals can make these referrals.  I wondered therefore whether I can ask for your support in making this referral.

According to the National Framework for Children and Young Peoples Continuing Care, assessment for continuing care should meet the National Service Framework for Children, Young People and Maternity Services (2004) standards, particularly the following:

Standard 8 – ‘Children and young people who are disabled or who have complex health needs, receive co-ordinated, high quality child and  family-centred services which are based on assessed needs, which promote  social inclusion and, where possible, enable them and their family to live ordinary lives.’

I have looked at the criteria for Children’s Continuing Care as outlined in the above document and I include below a summary of how both school and Mum believe that Tess meets the criteria.  An equivalent very high level of need was identified during Tess’ draft Social Care RAS, where Tess scored in the ‘critical’ range, showing that she needs the maximum level of help available from Children’s Social Care.  Mum is hoping that the RAS will be considered when the legislation that supports this new form of social care assessment comes into force on September 1st.

There are ten care domains that are assessed as part of Children’s Continuing Care.  Each domain can have up to five levels of need, based on a mixture of complexity, intensity, unpredictability of need and risk to the child/young person.  The levels are: severe, high, moderate, low, no needs.  I have listed below how we believe Tess meets each of these criteria.

• Challenging behaviour

In the Framework, ‘Challenging behaviour’ is defined as ‘culturally abnormal behaviours of such intensity, frequency or duration that the physical safety of the person or others is likely

to be placed in jeopardy, or behaviour which is likely to seriously limit use of or result in the person being denied access to ordinary community facilities.’

Tess demonstrates a consistently poor ability to self-regulate her behaviours in maintaining personal safety and development, despite specialist health intervention. CAMHS Oldham have worked with Tess’ Mum to support Mum to use anxiety management strategies with Tess but despite these being implemented by Mum, Tess’ high anxiety has not abated.

Tess is likely to require ongoing, high-level support from agencies including CAMHS, school and the Children’s Social Care team.  The types of behaviour that Tess presents with at home and at school include: agoraphobia; negative perseveration and rigid thinking; panic attacks; hearing voices and seeing figures; inability to tolerate being around others.

For these reasons, Tess meets the criteria for ‘severe’ level of need.

• Communication

Tess has consistent problems with social communication and social understanding due to her inability to take on board different perspectives, leading to frequent communication breakdowns that have a severe impact on her emotional wellbeing, her ability to access the curriculum at school and her ability to form relationships with other people.

Due to her social naivety she is at risk of bullying and/or being exploited or manipulated by peers and/or adults.

For these reasons, Tess meets the criteria for ‘high’ level of need.

• Mobility

Tess needs some assistance and requires support to access curricular or extra-curricular activities.  Tess meets the criteria for ‘low’ need in this area.

• Nutrition, food and drink

Tess has no additional needs in this area.

• Continence and elimination

Tess has no additional needs in this area.

• Skin and tissue viability

Tess has no additional needs in this area.

• Breathing

Tess has no additional needs in this area.

• Drug therapies and medicines

No medication or drug therapies are available to manage Tess’ condition.  Symptoms therefore have to be managed by skilled practitioners/carers on a 1-1 basis 24 hours a day.  Frequent social communication breakdowns and/or panic attacks have a severe impact on Tess’ emotional wellbeing.  Tess’ presentation is unstable and her symptoms fluctuate, requiring ongoing sensitive management by skilled individuals.

This places Tess in the ‘high’ level of need category.

• Psychological and emotional

Tess experiences acute and sometimes prolonged emotional/psychological dysregulation, as well as symptoms of serious mental illness (hearing voices, seeing menacing figures).  The fluctuation in Tess’ mood needs specialist support and intervention and has a severe impact on her ability to engage in day-to-day activities.

For these reasons, Tess meets the criteria for a ‘high’ level of support in this area.

• Seizures

Tess experiences occasional seizure-type activity and is currently being investigated for PNES.

For this reason, Tess meets the criteria for a ‘moderate’ level of support in this area.

Overall, Tess scores three high and one severe rating.  The NHS ‘Decision Support Tool’ gives a guideline that three high, one severe or one priority rating indicates a need for continuing care.

I would appreciate it therefore if you could refer Tess for an assessment for Children’s Continuing Care.  Please can you let me know of your decision at your earliest opportunity and do not hesitate to contact me if you require any further information.

End of letter.  I’m pleased to report that the GP has agreed to make the referral. 

I feel a bit like Harry Potter using the Marauder’s Map to reveal all of Hogwarts School of Witchcraft and Wizardry.  Those of you who know your Harry Potter will know that the Marauder’s Map is not fooled by animagi, polyjuice potions or invisibility cloaks. 

Similarly, in my attempt to secure NHS Continuing Care funding for Tess, I will not be hoodwinked by obfuscation, procrastination or any other obstacles those gate-keepers and fund-holders try to place in front of me.

Door 1 (referral) – Alohomora!