DBS stuff

Here are some extracts of the correspondence.

Extracts from a letter from HCW to Oxford:

“The reasons for this (decision to refuse funding) are listed below:

the panel took into account the clinical and treatment history of the patient, the current clinical evidence for the use of DBS to treat this indication, and HCW’s new technologies policy (*NB/ need to get a copy of this).

From the information you submitted (Oxford), we understand that Oxford is one of only 3 centres in Europe undertaking DBS for pain, and has treated about 64 patients over the last 10 years, 18 of which were for face/head pain. …HCW’s view is that the application of DBS to treat neuropathic facial pain is experimental and as such constitutes research. GMC (what is this?) guidance states that “before starting any research you must ensure that ethical approval has been obtained from a properly constituted and relevant research ethics committee”.

Unfortunately, despite our best endeavours, we have not received confirmation from you that this procedure for this patient is adequately covered by research ethics approval. In the absence of this information, the Panel were unable to approve funding.

If you believe you have any exceptional circumstances or additional information to support this funding request, you may request a copy of the Review Policy which explains the review procedure should you wish to request one.”

Extracts from an e-mail from Edwina Hart, Minister for Health and Social Services:

explains the process of HCW looking at my funding via an Individual Patient Commissioning Panel. She states that she has asked her officials at HCW write directly to me to explain the reasons for turning down the request for funding and outline the process for requesting a review of the original decision. (waiting for letter)

Extracts of a letter from Prof Aziz to HCW:

“you state that DBS for neuropathic pain is experimental. This is not the stance the Body of Neurosurgeons internationally would take. DBS for pain is one of the oldest indications but the numbers remain small as very few patients are referred for this to specialist centres. … the ethics I have are for understanding the physiology and research into the cognitive aspects of DBS for neuropathic pain – the procedure itself is fairly standard.

He concludes with a pithy statement on the track record of Wales’ funding for patients such as myself.

Extracts from e-mail from Professor Aziz’s DBS Pain Specialist nurse Liz Moir (in response to an e-mail from my father)

“With regard to HCW there is nothing further we can do this end to overturn their decision not to fund. We have previously been through the appeal process and failed. The issue of moving to England is obviously a drastic measure, and I have to advise you that even if Nicola moved and registered with a GP in any area, we would still have to apply for funding and there is a chance this would be turned down. DBS for pain is almost always funded in England on an ‘exceptional case’ basis and this involves a panel from the patients local Primary Care Trust meeting and discussing each individuals case. If it is felt that the patient being considered for treatment is not exceptional over and above any other person with the same condition then treatment is not funded. Proving exceptionality is difficult, particularly for those of us who care for patients in chronic pain as we deem all of our patients to be exceptional cases given the chronic nature of their condition.”

She notes that Oxfordshire PCT is not good at funding DBS, and no PCT “routinely” funds for it. They are occasionally successful in their appeals.

Plans:

See Neurologist – to a) get advice on treatments available, and whether they agree with the idea of DBS and b) to be under a physician’s care for med adjustment and care as at the moment I have slipped between the cracks somewhat and have no way of adjusting my meds, as the GP has no authority. This has to be a Welsh consultant as HCW will not take advice readily from another English Doctor.

See Mr Simpson – my Welsh Neurosurgeon – for advice on other surgical treatments available, other stimulators etc. And his advice on who to see above.

See AM Kirsty Williams again

See PM Roger Williams

Talk to Liz Moir – get reassurance over potential effectiveness of DBS, any other ideas, get stats about DBS for pain, and any contacts if possible, case studies.

Any other ideas gratefully received as ever!

Its all rather depressing, and a lot rests on whatever a neurologist says, and of course I can't predict that - though all I know and have tried, certainly strongly indicates that there is nothing else to be done, that wouldn't be very likely to make me worse off (for instance any other ablative procedure) but while I know a lot, I'm not a Dr!! ;) It is all very boring though, and I am very tired at the moment, what I would give for a rest. Hey ho....at least the sun shines!

Niki xxx