FUNDING LABYRINTH. GUIDANCE NEEDED – CAN YOU HELP?
Ever since I left hospital over four years ago the Mental Health Act has provided me with some form of protection, it has allowed me to receive section 117 aftercare. This has meant that the discharge plan and care package formulated shortly after my release from hospital has been funded by a joint arrangement between the Local Authority and Health.
The Mental Health Act is complex in its own formidable way, ask anyone who has ever been sectioned. It certainly felt complex and at times draconian when I was detained in hospital and given I was sectioned under section 3 of the Act the powers the professionals held were huge. I was detained for over a 17months and I hated every single day, I felt degraded and powerless in a medical system I really didn’t understand. I never thought this piece of legislation would be my ally and yet today I realise that the protection it offers to those who have been detained under section 3 and who still have care needs is vital.
The act states that if you have ongoing care needs in the community as a result of your mental health then it has to be funded. Now that has been crucial to my leaving hospital and accessing the support I need to live in the community. My therapy, my psychologist, my support workers, my care co-ordinator and ongoing access to the crisis team out of hours have all been provided as a result of section 117 aftercare. The act states that this free aftercare should only stop when you do not need any more help from the NHS or social services. There are some safeguards to ensure that the funders can’t just pull the plug on a whim, they have to prove your needs have changed.
When I came out of hospital the legislation at that time stated that due to my circumstances when I was detained, my care needs under s117 had to funded by the authorities in the area where I was initially sectioned (Area A). This meant that a joint funding arrangement was established between the then PCT (primary care trust) and Local Authority, and initially they insisted I reside in their locality. The s117 aftercare was agreed and monitored by the Continuing Health Care Team in Area A.
My family however lived in a neighbouring area and it was were I had originally resided before I was hospitalised, so approximately 2 years ago I relocated to the village near my family in Area B. Despite this being in a different county the original funders were still legally responsible and had to meet the bill. To me at least this seemed fair, after all they had taken away my liberty, sent me to secure units that traumatised me and treated me worse than a third class citizen.
With the arrival of CCG’s (clinical commissioning groups) which replaced PCT’s, the law stayed the same and so they took over funding the health component of my care. Now the only concerns we experienced was when I relocated and I registered with a local GP (family Doctor) in Area B, the Area A CCG insisted that all my Mental Heath care was provided by the trust they had a contract with in Area A and not the one serving my new local area. It has led to some confusion and it means that currently my psychiatrist is in a different county area from where I live, the hospital I’m linked to as a result is not my nearest psychiatric facility.
We recently realised this cross border provision was potentially unhelpful and so we asked for an explanation as to why I had to receive my services from a region that I no longer live in. All we asked for initially was joined up working, the local hospital to be notified about us and possibly have access to my notes as a matter of routine, so I wouldn’t be such a surprise to them. But we couldn’t get the funding area to agree and we were just told this is how it is, so we asked for them to explain it to us in writing. It appeared to us that we were encountering bureaucracy at its very best.
We have been told for months a written response was coming, but it has taken many many months to get any idea of the thinking behind this rather ludicrous decision. This wasn’t just any request it was based on genuine concerns that I and my family have, cross border working is only ever successful if there is real partnership and sharing of knowledge.
My concern and that of my family is this, if I ring the Crisis Team in Area A and they feel I am unsafe or at risk, they tell me, they’d call the police to do a safe and well check. Except in my case it would be my local police force in Area B and if I needed to be taken to hospital it would be in Area B. I really don’t have any issue with that except the local hospital will know absolutely nothing about me as I’m not their patient, yet I have a care plan and aftercare package. The same issue arises if I needed treatment for self injury or if the family became concerned and took my to hospital themselves, I’d go to my local hospital and again we would encounter the same problem.
This week the letter we have waited for finally arrived, but it wasn’t what I or anyone else was expecting, because much to our dismay we are now told that new guidance regarding funding has been issued. This new guidance potentially has huge implications not just for me but for many other people too.
Last August revised guidance was issued to CCG’s the document entitled ‘Who Pays’ gives guidance as to determining responsibility for payments under continuing health care. My funding falls under such guidance and thus the current CCG and Local Authority (Area A) are now trying to establish if they or my local CCG and Council (Area B)) should be paying for my aftercare.
Having tried to find out more about the ‘Who Pays’ guidance I can honestly say the legislation is a minefield, the legalese that abounds in it is unbelievable. Yet this guidance could determine which funding panel is going to be analysing my care needs and a huge bill landing upon the desk of one CCG and Council whilst another CCG and Council will have huge cost savings.
Now all of this may not impact my care, but I cannot be certain and in the meantime the confusion continues in relation to current day out of hours cover etc. This past year we have faced a funding minefield, just to get an agreement for psychology. If you know the funding processes of health you will understand some of the difficulties we have endured. Funding Panel meets, fail to make a decision instead asking for further information, and then you have to wait for another panel meeting. Months go by before that next meeting happens and when they meet they still don’t make a decision. Meanwhile as a service user your left to wander aimlessly without the care you need and no one cares if you start to go downhill.
It took over eight months to get a simply decision and the cost implications were neutral, it is only in the last 6months that I have finally got my care package sorted, there is no way I want to jeopardise this and yet this piece of guidance which is impossible to read and fully understand could cause chaos. If my funders change I cannot be certain the new funders will agree with my current care needs, will they honour the contracts currently in place, they might insist on changes that are detrimental to my ongoing progress.
Its worrying not just for myself but for all the other people this could affect, if your s117 aftercare is being funded by the wrong CCG you could be faced with the uncertainty that follows. I cannot imagine my local CCG (Area B) willingly welcoming me, a patient with a care package which will impact upon their budget. I can’t be certain that they won’t want to review everything or look at cost savings any way they can.
For now I’m left in limbo waiting for the CCG in Area A to decide if they should be funding my care, until then everything else stands waiting. The bureaucracy that abounds is ridiculous and if the CCG is finding it confusing what chance do I have to understanding this. I wonder if those who produced this guidance thought about the implications for people under section 117 aftercare, I very much doubt it.
I apologise if this bog is confusing, if by any chance you understand the ‘Who Pays’ guidance and the impact it has upon s117 please can you contact us, any help will be gratefully received.
Copyright DID Dispatches 2014