Years ago I was an expensive patient, inpatient care in some rather costly forensic and secure units led to heavy bills for my then PCT, indeed when I came out of hospital my care costs were expensive too. I have always appreciated the funding provided by the NHS indeed I have until yesterday always respected the people at both the PCT and now Clinical Commissioning Group. But yesterday my views were shattered by a decision that was both ill conceived and lacking in any regard to patient care. My current CCG Shropshire stopped my funding without warning for my much needed talking therapy, they didn’t do this because my needs have changed they did because it’s financially beneficial to them.
Last year I wrote a blog, asking for advice relating to section 117 aftercare and who should pay, I had found myself in a situation where my care was being provided by one CCG when I actually live in the area of another. This decision was based on legislation in place when I first moved back to my home area after my long stays in out of area hospitals. At the time who paid depended upon the place where I was when I was detained under the Mental Health Act, and in my case it fell upon Shropshire. But when I relocated nearer my family and back to my home area in Cheshire I was made to still access services in Shropshire. So my mental health team and the like are based over the border from where I now live and until changes in the law Shropshire CCG were liable to fund my continuing health care needs. But the Government changed the law and suddenly a new document appeared called ‘Who Pays’, it clearly showed my funding arrangements needed to change. Simple you would think, but sadly it’s a chaotic, bureaucratic red tape nightmare with me as piggy in the middle.
So after months of trying to ascertain what was happening, being reassured numerous times that my Psychology would continue without interruption I am now faced with fighting for survival as funding has been instantly stopped without warning by Shropshire CCG. They have failed to transfer me to the relevant Cheshire CCG, failed to ensure continuity of care and failed to inform anyone involved from my care coordinator to myself of their decision.
Yesterday in therapy I discussed how I had had the guilt trip played on me relating to my social care funding; my PA support, which ironically is still to be funded by Shropshire local authority. The local authority had wanted a cut in the number of hours I currently have and they tried hard to try and get me to agree to a cut in service not based on need but a purely financial decision. As I spoke of my concerns about the CCG and my fears for the future I was then informed that our sessions maybe coming to an end not because I’m better or ready to move on but simply because the CCG is no longer willing to honour a 3 year contract despite being just 14 months into it.
So today after much soul searching I called Shropshire CCG, who passed me from one person to another without no answer in sight. They even promised they’d call me back but then didn’t. I tried calling my CMHT who knew nothing about the decision of the CCG, indeed they told me I had funding agreed for 3 years of therapy. The poor lady I spoke to was to be blunt baffled by this madness and as concerned as I was at the nonsensical decision. As always happens when you need someone there off sick, or out of the office so my Care Coordinator wasn’t available today. Having resorted to taking extra medication to try and calm myself down I realised this funding nightmare was making me spiral downwards and I don’t deserve that.
In sheer desperation I called Shropshire CCG back who told me bluntly, I wasn’t the only person this was happening to, that the decision has come from on high and that they’d written to the receiving CCG back last year, but they couldn’t say that they had ever chased a lack of response. In fact they clearly hadn’t or I wouldn’t be in this mess. I tried to explain the guidance, about mediation between CCGs and in the end said if it wasn’t resolved I’d have to legally challenge their misguided decision. Surprisingly they now are going to call me back and promise to keep me informed of what is happening, but they can’t guarantee that therapy won’t stop. I’m not holding out much hope given the way this particular CCG has behaved in recent days. You see the guidance issued to CCGs back in September 2013 clearly States :
7. The safety and well-being of patients is paramount. The underlying principle is that there should be no gaps in responsibility – no treatment should be refused or delayed due to uncertainty or ambiguity as to which CCG is responsible for funding an individual’s healthcare provision.
8. Since it is not possible to cover every eventuality within this guidance, the NHS is expected to act in the best interests of the patient at all times and work together in the spirit of partnership.
9. NHS England expects that all disputes will be resolved locally, ideally at CCG level, with reference to the guidance in this document and coming to pragmatic solutions where responsibility is not immediately obvious or where it may be shared. In cases that cannot be resolved at CCG level, Area Teams of NHS England should be consulted and should arbitrate where necessary.
Yet Shropshire CCG Appear to have ignored the guidance, no transfer date was agreed, my needs have not been paramount and treatment is being refused/terminated by them. Bonkers or what!
I then called the Cheshire CCG who claimed not to have received any letter and they knew absolutely nothing about me or my case. But they were at least helpful, supportive and understanding, they appreciated I was piggy in the middle and my care and well being we’re being overlooked by Shropshire. They even agreed to call various people to try and start finding out more about the case and were adamant it would be detrimental if my therapy was to stop. But funding is a complex matter, funding panels have to be convened, reports written and it all takes time. Given no one in my locality knows anything of my Mental Health I’m not seen by the local team, this is not straight forward. The lady I spoke to even gave me her name, that hadn’t happened in Shropshire they seem to not be bothered and were really uninterested. To be fair to the Cheshire CCG they are being left to pick up the pieces of another CCGs mishandling and mess, they didn’t know me till today but they have at least shown compassion and care, for which I am grateful.
So where does this all leave me, I’m currently facing an end to the one treatment in the past 12 years that has made any significant progress. I’m facing an end to trauma therapy, with no closure work and unresolved trauma still to be dealt with. I’d only started trauma work a few weeks ago, so this is a crucial stage in my treatment and now it could all be crashing down around me. I’m left wondering if I will ever get treatment again, will I ever actually have a chance to recover from the past and I’m left worrying that I’m going to spiral back into that revolving door admissions cycle I endured just a few years ago.
Most of all I’m left knowing that this disruption is all so utterly needless, my therapy costs the NHS less in a year than any impatient admission did and my care needs have reduced by over 50% in the last 14 months since I started the therapy. When I was at my worst and in forensic Psychiatric care my care costs for just two months would most likely have paid for all three years of my therapy. Yet no one bothered about paying to send me to a place that didn’t work. Now we have a treatment that’s cost efficient and effective and they stop funding. So the NHS is going to end up spending more on my care needs, crisis support and future hospital admissions as a result of this funding cut than they are saving right now. It doesn’t take a rocket scientist to see how illogical this decision by Shropshire CCG is.
Right now I’m coping just and trying to remain focused on fighting for funding, it’s easy to fight when your fighting for survival. That’s exactly what I am doing right now I’m fighting to stay afloat, fighting for the treatment I know that works and fighting to not return to those dark days when all I wanted to do was die. I’ll keep you posted on what’s happening and if there’s any good legal minds out there who could help or assist right now, please get in touch, I need all the help I can get right now.
copyright DID dispatches 2015