Sunday 7 September 2014

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!




Saturday 6 September 2014

NAS offers to meet with families of children placed inappropriately in institutions

So….on 27 August I wrote a letter to Mark Lever, Chief Exec of NAS, enquiring about NAS's support for the families whose children are currently in residential placements at a great distance from home. 
Yesterday I received a response from Mark, which is included below:
Dear Zoe,

Many thanks for writing to me highlighting your concerns about the inappropriate treatment of people with autism by statutory bodies. I completely sympathise with you and agree that the cases you have highlighted are unacceptable, and the relevant bodies need to address these cases as a matter of urgency.

The National Autistic Society does campaign on cases like these in a broader context; in order to affect change when issues like these arise, we make sure we are voicing the interests and concerns of people with autism and their families to inform national policy solutions at Government level. The NAS was a key stakeholder in the review following the horrific events at Winterbourne View and we have been working, alongside other charities like Mencap, to push for changes to the system and ensure that scandals of this nature do not happen again.

When families come to us for support for campaigns like those that you highlighted, we do what we can to help. We have often helped to promote petitions and campaigns, put out media statements or web stories, advise on complaints procedures and put people in touch with lawyers.

However, our resources are limited and we do not have caseworkers. We have a helpline, and have developed relationships with excellent lawyers who we can direct families to. When lawyers consider it to be helpful, we are occasionally asked to provide evidence submissions or third party interventions to strengthen cases and highlight the wider effect rulings can have on other families. However, we are unable to take cases on ourselves – we do not have a legal team.

You are absolutely right that the NAS should be playing our part when these instances arise and I think it would be productive to further explore what more we can do to be there for those families experiencing these horrific situations. To that end, I would be happy to facilitate a wider discussion with any of those families at the heart of the cases you mentioned in your letter, about the role that they would like to see the NAS play.

If that sounds like a useful exercise to you, please let me know and I’ll make arrangements.

Kind regards

End of letter.
I am now in touch with the families to ask if they want to go forward with this and what they want to ask the NAS to do to help them.  I’ve got back to Mark to let him know I’ll be in touch again soon. 
I note Mark’s emphasis on limited resources and the lack of a legal team and wonder what NAS members think about whether NAS should have its own legal team that was set up to help in cases where the human rights of people with autism are being abused?