Friday 22 May 2015

Continuing care applications submitted

Phew.  Finally - two applications for NHS Continuing Care submitted to two different Clinical Commissioning Groups (CCGs).  Both were started in August 2014....ten months ago.  We haven't hung about with either of them: each has had its own hoops to jump through and the processes have both been completely different.

The need for Tess' application was identified as part of a Child in Need meeting due to the high anxiety that results from her autism and the impact of this on her learning and ability to lead an ordinary life.  A multi-disciplinary team consisting of representatives from school, Tess' Mum, Tess' social worker, and keyworkers from CAMHS have been involved in writing the 'Decision Support Tool' (DST) - the form on which the case is made for funding.  It's a 22 page document (deep joy) covering the 'care domains' of: challenging behaviour; communication; mobility; nutrition/food and drink; continence/elimination; skin and tissue viability; breathing; drug therapies and medicines; psychological and emotional needs; seizures/altered states of consciousness.

Tess scored 'high' on the psychological/emotional domain; 'severe' on drug therapies and medicines; 'high' on communication; 'severe' on challenging behaviour and low in the other domains.  There is no 'severe' category in psychological/emotional or communication.  If there had been, she would have scored there.

The other application was for Ned.  In this case it was myself, Mum and Ned's social worker who identified the need for Continuing Care funding.  Mum and the social worker filled in the DST 'screening tool' (which wasn't done in Tess' case) and the social worker sent this off to the CCG's Continuing Care bod, the Complex Case Manager. Then, unfortunately, the social worker left the authority so Ned's Mum took on the responsibility of following this up.  Mum was asked to remind the Complex Case Manager what prompted the request for Continuing Care funding, so she emailed back the DST screening tool that had already been emailed to the Complex Case Manager some months previously.  Despite having the information outlined clearly in the screening tool, Mum was asked by the Manager to 'describe which of your son's needs are currently unmet so that I can advise you on the most appropriate way to progress your request.'

Sensing the potential for some kind of NHS sleight of hand, Mum consulted me and I agreed with her suspicions that she was possibly being directed away from a Continuing Care application.  I had heard another pot of funding being referred to - both in Tess and Neds' cases and in Maisie's case (for any of you who dont know the Get Maisie home story, more on that here).  This pot of funding is called different things in different was an 'Independent Funding Request' in Maisie's case and an 'external use of resources' request in Tess and Neds' cases.  It appears to be a discretionary fund available to Commissioners where an application does not meet the criteria for other established NHS funding schemes.

What could the motivation be for directing applicants away from the Continuing Care application process towards a different pot of funding when it hasn't even been established yet whether or not the applications meet the Continuing Care criteria?  Is the 'independent funding request'/'external use of resources' funding a one-off capital discretionary grant whilst NHS Continuing Care funding, once granted, is a recurring (lifelong??) entitlement that  brings with it statutory (and therefore legally enforceable) rights?

Ned's Mum wrote back with a letter which more or less followed the care domains outlined in the Continuing Care DST.   Ned, whose autism is characterised by high anxiety leading to oppositional, demand-avoidant behaviour, scored exactly the same as Tess, in the same domains.

Neither of the young people are currently medicated so their 'severe' score in the domain of drug therapies and medicines was made on the grounds that:  'no medication or drug therapies are available to manage Tess/Neds' condition.  Symptoms therefore have to be managed by skilled practitioners/carers on a 1-1 basis 24 hours a day.  Frequent social comunication breakdowns and anxiety attacks have a severe impact on emotional wellbeing and ability to take part in everyday activities.'  

That is, of course, entirely outside the box of the Continuing Care process and is likely to be rejected....our view is that we will see what the law says about that.  

Our plan now is to see whether these two applications are directed away from the Continuing Care process and if they are, to challenge this by asking on what grounds each of the applications failed to meet the Continuing Care criteria.

Place your bets.......'independent funding' or Continuing Care?

Tuesday 12 May 2015

Get Maisie Home: meeting the Commissioner

In my last blogpost on the Get Maisie Home campaign, I outlined the plans that me (with my Justice Together hat on), Sally (Maisie’s Mum) and Gill (Sally’s friend and supporter) had put together to work towards getting a package of care in place for Maisie when she returns home.  These included:
  • Accessing copies of relevant documentation that could help to build the case for special provision
  • Ensuring that an Education, Health and Care (EHC) needs assessment was started
  • Securing a Child in Need assessment
  • Putting in place provision to meet Maisie’s immediate needs upon her release from hospital
  • Work on the core difficulties at the heart of autism
Those last two kind of go hand in hand as work on certain difficulties at the heart of autism will significantly contribute to Maisie’s emotional wellbeing and resilience.
Our next step was to try to meet the Commissioner for children’s mental health.  Turns out he is also the Commissioner for young people and adults’ mental health as well as Commissioner for a whole host of other vulnerable peeps.  What a huge agenda…..wouldn’t have his job for a gold clock.
We met with him yesterday morning and to be honest, I am a) gobsmacked and b) absolutely buzzing from the response we got from him.  He agreed, without batting an eyelid, to commission the input from the Tavistock Clinic.  That’s likely to be 3 x 6 weeks of input at over £3K a throw.  The Psychologist from CAMHS will be doing the ‘external funding request’.  Don’t mind if I do.
Sally talked about the problems Maisie has sleeping……she can be up in the middle of the night and this is when self-harming can sometimes take place.  We explored options to address this and agreement was given in principle for a personal budget for a care worker in the home 2 or 3 nights a week.  A personal budget.  Just like that.  Some of you who regularly follow my blog will know of the hoops we are still jumping through in Oldham to get a personal budget (via the continuing care process) for two of the students at Bright Futures School.  Leap-frogged. Just like that.
Sally raised her concern about what might happen if Maisie reaches crisis again.  Hopefully that won’t happen if the right services are in place, but it was useful to cover that base, just in case.  A fast track system will be put in place.  No police, no A & E.  Immediate support from the new 24/7 Crisis Intervention Team.   More detail needed but a good start.
We discussed that it may well take a while for the EHC plan to be implemented (it isn’t even drawn up yet) and touched on the possibility of some emergency outreach support being put in place for Maisie whilst she is at home so that she has positive activities to give her structure and enjoyment.  Though we didn’t go into detail, we did mention the absence of a Child in Need assessment (which may well cover this type of support).  I got the impression that the Commissioner quickly saw the rationale for reminding his social care colleagues of their duty of care towards Maisie (a problem shared is a financial burden halved).
Afterwards I was reflecting on why it might be that this meeting had gone so well.  Possible contributory factors:
1. Maisie’s Mum Sally has been extremely proactive in campaigning around Maisie’s situation.  She’s been on telly and in the papers locally and nationally as well as keeping up the momentum around the petition to reinstate specialist CAMHS services in her home town and ensuring that Maisie’s story is highlighted on social media.
2. I think it was clear to the Commissioner that we knew our onions
(in terms of rights, entitlements and basics of the law relating to these) and that Sally wasn’t going to be fobbed off with anything less than she and Maisie deserved.  We didn’t get anywhere near mentioning Ombudsmen, judicial reviews or further press coverage (no need for the nuclear option, thankfully) but I think he knew Sally wouldn’t hesitate if necessary and that she would be well supported if she chose to go there.
3. It’s helpful to have a mindset of ‘making friends’ with people who are decision-makers (even if you don’t like them!) and seeking to build consensus around needs and provision.  Tread carefully and diplomatically and leave the nuclear option to the absolute last resort. 
So my take home messages to anyone in a similar position: tool up. 
Tool up with knowledge (this is a great place to start for an overview of the rights and entitlements of disabled children, adults and their families) and tool up with people who can support you and who have access to further specialist knowledge and networks (some of us have come together to try to provide access to this kind of support via Justice Together – drop us a line, we’ll see if we can help).
Find a way to place the ball firmly back in the court of the service providers and Commissioners. 
For Sally and Maisie, this is being achieved via the EHC Plan (the statutory framework that places duties on the service providers) together with the indirect pressure brought by the high local profile of Sally’s campaign……..and also possibly that slightly intimidating link to those feisty women from Justice Together J . 
As we were about to leave, the Commissioner said to me casually, ‘what was your name again?’ and scribbled it down on his pad. 
Waitrose cafĂ© for us for meeting post mortem.  University of google for the Commissioner.

Saturday 2 May 2015

Get Maisie home

Maisie is a 13 year old girl from Hull.  She has recently been diagnosed with autism and has been struggling with self- harming.  She is currently in a children's hospital in Bury - over 100 miles away from her family - because there are no longer any inpatient children/young adult facilities in Hull.

This is causing a terrible strain on Maisie and on her family. The local children on her ward get daily visits which is very difficult for Maisie to see. She feels lonely and isolated on top of her other problems which need care and treatment.
I first met Sally, Maisie’s Mum, and her friend and supporter, Gill, at a meeting in Leeds between the NAS, representatives of Justice Together and some parents of young people who have been detained against their wishes.  Thomas Rawnsley’s Mum Paula was also attending to seek help from the NAS in her campaign to get justice for Thomas, who died in state care 3 months ago.
It was a productive meeting with lots of experiences shared and offers of help from the NAS to parents seeking support in their respective campaigns.
I kept in touch with Sally and Gill after the meeting as we had decided to work together on a plan to take action to help get Maisie home by using Sally’s parental rights and entitlements to firmly put the ball back in the court of the services and organisations who should have supported Maisie in the first place to prevent her tipping over into crisis.  We identified the services/provision that should have been in place for Maisie.  I was acting on behalf of Justice Together (JT) - seeking to add JT knowledge and experience to the excellent campaigning already done by Sally, Gill and Get Maisie Home supporters.
The over-arching entitlement that we identified was an Education, Health and Care needs assessment for Maisie.  The main focus would be on the educational placement but part of the EHC assessment process should also include a social care assessment.  Then there was the issue of what health provision should be in place. 
With Sally’s consent, I am listing below what we have done so far so that it provides a possible ‘template for action’ for anyone else whose child is ever in a similar situation.
Copies of relevant documentation
Sally made what’s called ‘Subject Access Requests’ for all the documentation relating to Maisie from hospitals and health and local authorities involved in her care.  We did this so that we know exactly what has been said by whom and when about Maisie’s care: it may be that some of what’s contained in hospital and health/local authority records and emails will be helpful in making the case for Maisie to have certain specialised provision.
The EHC needs assessment
We noted that careful assimilation of clear evidence of need is crucial for this assessment.  We looked at some example EHC forms and talked about Sally working closely with the school SENCo to make sure that a) the SENCo calls for reports from all the relevant professionals who have been involved with Maisie and b) we can ensure that the wording of the report and the way that Maisie’s needs are described matches the provision that Sally wants for her.
Child in Need assessment (social care)
Sally has sent an email to the Manager of the Children with Disabilities Team asking for a Child in Need assessment of Maisie under S17 of the Children Act.  We noted that as of April 2014, this assessment should be done using a system called the Resource Allocation System (RAS) and it should identify both what Maisie needs in terms of support to take part in community-based activities and the fact that Sally may need some respite time when she can have a break from her caring responsibilities.  We looked at an example RAS assessment form and noted that the way it describes young people’s potential difficulties and challenges is more geared towards those with learning disability (LD) than it is towards those with no LD who can often have different, but equally severe challenges.  Maisie does not have LD, so we talked about how to make sure the severity of her challenges are accurately represented.
The outcome of the RAS should be either direct payments or an individual budget. 
We noted that in Sally’s local authority, the children’s social care web site page was very clearly trying to steer parents towards a CAF assessment in the first instance.  A CAF assessment is where all professionals involved with the young person and family meet together to troubleshoot problems and identify solutions.  We noted that a CAF has no ‘legal teeth’ and does not result in any kind of budget for the family whereas a Child in Need assessment places a statutory duty on children’s social care to make sure all needs are met and to provide the necessary resources (budget) to meet those needs.  We resolved that if social care tried to move Sally away from a Child in Need assessment towards a CAF assessment, Sally would assert Maisie’s statutory right as a disabled child to have a Child in Need assessment.  We noted that this right can be appealed to the Ombudsman or via judicial review, if necessary.   
Transition from hospital to home
We talked about a phased transition from hospital for Maisie with a clear plan for key support services to be in place – this would include a) initially time at home where she can hang out and chill but time that also has fun activities structured into it so that she is distracted from thinking back to her negative experiences and is able to focus on present, positive experiences (e.g. she is good at and enjoys dance, so that might be something that can be planned in) then b) some outreach provision in the home from a potential school that Sally has identified then c) hopefully transition to a full time placement at the identified school (this needs to go at Maisie’s pace).  We noted that work done around Maisie’s mental and emotional wellbeing also needs to take place during this time (see further, below).
We noted the possibility of an autism service dog to give Maisie an uncomplicated ‘friendship’ as well as giving her some responsibility and providing positive experiences for her.
We emphasised that it will be very important to reduce demands on and expectations of Maisie whilst still giving her structure and positive experiences.
Work on the core difficulties at the heart of autism
This would include rigidity, poor emotional regulation and resilience, poor joint engagement, difficulties with perspective-taking leading to difficulties understanding others.
We talked about the possibility of including some RDI in Maisie’s educational package to help her work on flexibility, emotional regulation, anxiety, and the social communication competencies she needs to make and maintain friendships and relationships.  More about RDI here.
I undertook to send Sally an anonymised RDI assessment report that was done for another child so that she could get an idea of what such an assessment looks at and how it might help to make the case for specialised work on the difficulties at the heart of autism as a key part of Maisie’s package of care.
In RDI, there is an adult ‘guide’ (parent or teaching staff) who works on a 1-1 basis with the young person using the relationship to work on those core difficulties at the heart of autism (flexibility, emotional regulation, managing uncertainty and change etc). 
In my view, it would be possible to build this into an educational package both at school (eg 1 hour per day RDI activity with a keyworker who is trained and supervised by an external RDI Consultant) and at home where parents act as ‘mindful guides’ supervised by an external RDI Consultant. 
Emotional wellbeing & mental health
We noted that CAMHS locally have been unable to meet Maisie’s needs and that the secure unit she is currently in don’t seem to be working on Maisie’s emotional and mental health either. 
We know that Maisie’s CCG (Clinical Commissioning Group) actually have a statutory responsibility to meet her needs and so if they can’t meet them locally, they need to refer Maisie to a Tier 3 specialist mental health service that can meet her needs.
We have arranged to meet with the Commissioner responsible for children’s mental health to point out that Maisie’s complex needs are putting her at risk (she is in danger of self-harming) and that the CCG (as part of the local children’s safeguarding board) have a statutory duty to safeguard her.  We will then propose working together on implementing the package that we have identified.
There is a service for young people with autism and mental health issues provided by the Tavistock Clinic, called ‘Lifespan’.
They offer consultation to professionals working with young people so this might be a way to get the necessary expertise locally, with supervision from experts at a distance.  We noted that this service offers RDI, so it would dovetail with any such provision that was in place at school and at home.  The CCG would have to buy in Lifespan’s consultancy service but given Maisie’s needs we think it would be possible to make the case for this.
We noted that it is crucial that this aspect of Maisie’s difficulties is addressed in the EHC Plan in the education section as this is a significant contributory factor to her difficulties accessing the curriculum, as well as having a good quality of life.
So, those are our plans.  The tricky part now is getting all this in place so that when Maisie comes out of hospital there is good therapeutic care in place to prevent any possible relapse and to enable Maisie and her family to access the quality of life they deserve.