Leimyoscarcoma treatment options unfair…. in west Wales where choice is anathema.

I do not mind if something/some service is denied to everyone in the UK paying into the same mutual. What I do not like to hear is when someone in my town and post code is denied a treatment which is available in London. The National Sarcoma centre is at the Marsden, and there is a National Sarcoma Service. Unfortunately, unbeknown to the citizens and taxpayers of Pembrokeshire, until they suffer from sarcoma, is that this service is not available to them. This is what NHSreality calls COVERT rationing because one is not aware of it in advance. Net result is that money is raised, and this one patient gets “private” care. What about all the others in Wales? Local exclusion would be all very well for high volume low cost treatments, (this is not allowed) but is patently unjust for low volume high cost treatments. (allowed under the current “rules of the game”) Will the trust respond by saying they feel this is reasonable rationing? No way. They will use the words exclusion, restriction or prioritisation to justify their position. As a trust in special measures ( bankrupt and getting worse) it is not surprising they wish to save money… and the treatment may be poor value for money but this shows how unfair the situation is for those in West Wales, and it is repeated across many specialities and treatments.

Image result for unfair cartoon

BBC News reports today 23rd June 2017: Haverfordwest mum’s ‘roadblocks’ to SIRT cancer treatment

NHS Wales has been accused of “not being set up to deal with” certain types of cancer.

Anca Falconer, 36, from Pembrokeshire, was diagnosed with Leiomyosarcoma (LMS), a type of soft tissue sarcoma, just days after giving birth in 2010.

Her request for specialist treatment in England was refused.

The Welsh Health Specialised Services Committee said the success of Selective Internal Radiation Therapy (SIRT) “has not currently been established.”

Mrs Falconer, who lives in Haverfordwest, initially underwent extensive surgery and chemotherapy for her rare liver cancer, but it returned.

Her first request to the committee was rejected in 2013 on funding grounds, and her cancer consultant refused to submit another application, describing the efforts as being “futile”, and she was told she would have to find the money herself.

Fundraising efforts allowed her to receive the first round of SIRT, which involves injecting radioactive microbeads into the liver, at a cost of £10,000.

Mrs Falconer, who had been bedbound for about three months, said she felt transformed after the treatment.

“Within days I was able to stand up again. I can play with Mary and take her to school,” she said. “I had lost hope before.”

The second round of treatment costs £20,000 and is due by late August.

Mrs Falconer’s husband, Richard, 51, said NHS Wales was “not set up to deal with soft tissue sarcomas” with many of the specialist centres in England.

He added that he thought experts in Wales had “given up on his wife” four years ago and that she had received “nothing more than palliative care” and “roadblocks to all curative options that should have been on the table”.

Dr Sian Lewis, medical director for the Welsh Health Specialised Services Committee, said the “clinical effectiveness” of SIRT for the treatment of liver cancer “has not currently been established”.

She said it is only available to a limited number of patients in NHS England as part of a programme to assess its effectiveness.

The Welsh Government said NHS Wales will make a decision regarding the routine commissioning of SIRT when the results of the evaluation become available next year.

False hopes

Abertawe Bro Morgannwg University Health Board, which provided chemotherapy to Mrs Falconer, said if previous funding requests have been declined by the committee any subsequent submission has to contain “new clinical evidence”.

A statement from the health board said, while it could not comment on Mrs Falconer’s case, its “clinicians fully appreciate the distressing situation its patients are in”.

“It’s because of this they would never consider falsely getting a patient’s hopes up by resubmitting an already declined request when there is no new clinical evidence available.”

Hywel Dda University Health Board has also been asked to comment.

September 2016 – Mark Smith for Walesonline: Three Welsh health boards have been placed under additional Welsh Government scrutiny

Cardiff and Vale, ABMU and Hywel Dda are just one level short of ‘special measures’

Adrian O’Dowd in the BMJ 15th June 2017: Trusts boost ratings by engaging staff and including clinicians in management

Adrian Dowd in the BMJ 23rd June 2017 : The only way is up: the “special measures” trust that got back on its feet

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This entry was posted in A Personal View, Commissioning, NHS managers, Political Representatives and activists, Post Code Lottery, Rationing, Stories in the Media, Trust Board Directors on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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