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