Calls for patients to get explanation when treatment is refused

Cancer patient David Spink said he wasn't told why the drug had been refused

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NHS patients in Wales are being turned down for some specialist treatment without any explanation, say patient groups.

Many of the requests are for the funding of cancer drugs.

There have been calls for more transparency and discussion when applications are rejected.

The Welsh government said it believed the system was working well but was reviewing how communication with patients could be improved.

The concerns raised by patients and bodies representing them - including health watchdogs - focus on what are known as individual patient funding requests (IPFR).

Start Quote

I see patients in the cancer clinic that are being turned down - people are just devastated”

End Quote David Spink Cancer patient

These are applications for treatments and drugs which are not generally available through the NHS.

That is because the medicines may not have a proven track record or limited success, or may be for specialised surgery, including plastic reconstructive operations.

"Patients need to know exactly why they haven't had their request agreed," said Catherine O'Sullivan, the acting director for the board of Community Health Councils in Wales.

"That discussion is extremely hard, however I speak to too many people who don't know why.

"Whether or not that's the clinician who is reviewing it with them or describing to them why they have not had their treatment funded, or whether or not that's the panel not feeding back to them appropriately.

"That process needs to be tightened up."

BBC Wales spoke to one patient, 74-year-old David Spink from Tredegar in Blaenau Gwent. He was diagnosed with bowel cancer in 2011, which has since progressed.

'Devastating decision'

But a request by his consultant to be given the specialised drug treatment bevacizumab was rejected by the Aneurin Bevan health board.

"I feel very bitter that I am being denied something that has a probability that it can help me," said Mr Spinks.

"When your life is on the line and there is a drug there that can probably prolong your life and you are being refused it, how would you feel?"

Reasons for requesting specialised funding:

  • Drug not yet been approved by either the National Institute for Health and Clinical Effectiveness (NICE) or the All Wales Medicines Strategy Group (AWMSG)
  • Been appraised by NICE or AWMSG and not recommended for routine use within NHS Wales
  • Not received marketing authorisation in Europe for the purpose for which they are being requested

(Source: Rarer Cancers Foundation)

He said the same drug was widely available in some parts of south Wales without the need to go through a funding application.

"You don't even apply for that drug down in Swansea, it is given straight away if you require it," he said.

"There are pockets in south Wales where you can get it and places that you can't get it.

"I see patients in the cancer clinic that are being turned down - people are just devastated."

Ms O'Sullivan said she accepted that sometimes the funding was rejected for the best reasons - because the drug was not appropriate or may not enhance quality of life for a patient.

"People will clutch at straws when they find additional treatments, and quite rightly," she said.

"But you are raising an expectation that the treatment can be offered when perhaps the individual is not at that stage in the disease where it would give them any added benefit or added quality of life, or even length of life."

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The Welsh government is keen to ensure there is equity of access to treatment for all patients”

End Quote Welsh government

But she said decisions must be carefully explained - adding it was a "hard discussion" to have for both clinicians and patients.

Responding to the issue, the Welsh government said it believed the independent funding system was generally working effectively.

A spokesperson said: "However, the Welsh government is keen to ensure there is equity of access to treatment for all patients and that is why in October the health minister announced a review of certain aspects of the IPFR scheme.

"Officials started preliminary work on the review earlier this month. A formal review group is being established and will be tasked with considering further improvements in transparency, consistency of decision making, communication with patients and the public, and engagement with the All Wales Medicines Strategy Group.

"The future structure and operation of IPFR panels will also form part of the process."

The outcome of the review is due to be submitted to the health minister in early spring next year.

Aneurin Bevan health board said it would consider any future recommendations made by the Welsh government.

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