Cabinet Secretary for Health & Wellbeing
Scottish Government
St Andrew's House
Regent Road
Edinburgh
EH1 3DG
Our ref: 045CAF/2640DCH 08 May 2008
Dear
Cancer Treatment in Scotland
I write with reference to the above and to recent concerns raised by one of my constituents, Mrs Wishart.
Mrs Wishart is suffering from secondary breast cancer, which is not curable and she is concerned at the time taken to get certain cancer drugs in the UK even though these are available in Germany and the United States. These countries, amongst others, have drugs that are still not licensed in the UK as well as drugs that are licensed in the UK but not approved for use by the NHS.
Amongst other drugs not available in this country Mrs Wishart is seeking access to the drug Avastin, which clinical trials have shown shrinks the cancer and greatly improves the progression free time of the illness. Avastin can double the time before the cancer returns however, it is not clear whether it increases the patients life expectancy. America are doing trials at the moment which would suggest that with the type of breast cancer Mrs Wishart has that her life expectancy could be improved. Avastin is licensed in the UK but it is thought that it will take another year for this to become available in Scotland on the NHS if it is approved. Mrs Wishart believes this drug would greatly improve her quality of life.
Oncologists in Scotland cannot approach any NHS Trusts for any drug that have not yet been approved by the Scottish Medical Consortium, although they are licensed in this country, however in England this is not case and Oncologists can approach Trusts if they feel that the benefit of the drug is imperative to the patients care and would ultimately extend their life expectancy. The English NHS Trusts will also pay for this drug if they agree with the Oncologist for the use of the drug.
Mrs Wishart can pay for this drug privately however, she has been told this will mean she no longer has access to any of her other treatment through the NHS because this would mean a two-tier NHS system. Despite this a patient can go privately for a CT scan without it affecting their other NHS treatment.
I would be grateful if you could address the following questions which Mrs Wishart has raised.
1. Why do patients lose all of their NHS treatment if they pay part of their treatment privately?
2. Why does it take longer for drugs like Avastin to be made available in Scotland when it is already available elsewhere?
3. Why can an Oncologist approach a Trust in England and not in Scotland?
I would welcome your comments on this.
Yours sincerely
Jim Tolson
Liberal Democrat Member of the Scottish Parliament for Dunfermline West
Health and Well-being
Nicola sturgeon MSP
The Scottish
Government
[email protected],UK
Jim Tolson MSP
The Scottish Parliament
EDINBURGH
EH991SP
Your ref: 045GAF 12640DCH
Our ref: 2008/0021439
June 2008
Thank you for your letter dated 27 May 2008 regarding concerns raised by your constituent Mrs. Wishart about the availability of cancer drugs in the UK.
I was very sorry to learn of the difficult circumstances, which Mrs Wishart is dealing with.
Cancer and its treatment are complicated; often with drugs and other types of treatment used in combination. I understand that the arrival of individual new drugs can raise hopes and expectations. However, there is a need to ensure that any new drugs and treatments are assessed in order that we can be confident that they offer real benefits for patients in practice.
The arrangements in place in Scotland for assessing new drugs and treatments are through bodies such as the Scottish Medicines Consortium (SMC) and NHS Quality Improvement Scotland (NHS OIS). These bodies operate independently from the Scottish Government, and are widely acknowledged as being robust. These arrangements are intended to ensure that, where there are demonstrable benefits, NHS patients in all parts of Scotland are able to access services in accordance with their particular needs.
After careful consideration of the evidence provided by the drug manufacturer, SMC
decisions are made by a panel of experts from different fields including pharmacists, health economists, hospital doctors, general practitioners, nurse representatives, prescribing advisers, NHS Board Chief Executives, finance officers, public partners and the Association of the British Pharmaceutical Industry (ASPI) representatives. The SMC considers the evidence presented to it by the pharmaceutical company responsible for producing a particular drug. These are difficult decisions which need to weigh up a range of factors including the clinical benefits and costs.
The SMC has a "horizon scanning" function for all new drugs including cancer drugs
whereby it will approach the drug manufacturer once the product has been licensed in the UK by the Medicines and Healthcare Products Regulatory Agency (MHRA) and prompt them to submit evidence to support an application for the drug to be made available in the NHS in Scotland. Despite the SMC approaching the manufacturer in this way in 2007 regarding bevacizumab (Avastin) for first line treatment of patients with metastatic breast cancer. No submission for this drug has been made. Therefore the SMC has not recommended it for use within the NHS.
When a recommendation is made about a particular drug or treatment, NHS Boards and
Clinicians are expected to take full account of the advice provided. The decision on whether or not to prescribe a drug is a matter of clinical judgment, based on clinical skills and knowledge, the circumstances of the patient and national advice. Where a clinician judges that a patient's circumstances are exceptional, special exceptional prescribing arrangements are available within the relevant NHS Board to consider on a case-by-case basis, whether a drug or treatment (not recommended by the SMC) can be made available. Your constituent should fully explore this option with NHS Fife,
You raised a question about why patients cannot 'top up" NHS treatment by purchasing
drugs that are not available on the NHS. A fundamental principle of the NHS is that care is free at the point of delivery. In the interests of patient safety and good clinical governance, the current position is that a patient cannot be both a private and an NHS patient for the treatment of the same episode or package of care. For example, chemotherapy often comprises several different drugs given in combination; Therefore, if the drug in question (not recommended by the SMC) is given in combination with other chemotherapy drugs then that whole combination of drugs comprises the episode or package of care. Top up or co-payments where the patient pays only for the drug not available from the NHS are not allowed. -
The Scottish Parliament Petitioris Committee has undertaken a wide-ranging inquiry into the provision of cancer drugs in Scotland. Evidence was taken on a number of issues including "top up" payments. The Committee's report and recommendations were published on 18 June 2008 and will be considered carefully.
I fully appreciate what a difficult time Mrs. Wishart is going through and I hope that this
Information explains the need for a robust decision making process to secure the availability of drugs and treatments on an equitable basis within the NHS in Scotland.
NICOLA STURGEON
St Andrew's House, Regent Road, Edinburgh EH130G
www.scotland.gov.uk
Cabinet Secretary & Deputy First Minister
Scottish Government
Department for Health and Well-being
St Andrew's House
Regent Road
Edinburgh
EH13DG
Urgent.
Our ref: 045CAF/2640DCH
Your ref: 2008/0021439
11 July 2008
Dear
Re: Cancer Treatment in Scotland
I refer to my last letter to you regarding the above dated 27th May 08 and to your response dated 24thJune 08.
I have passed your letter onto Mrs Wishart and she has asked me to respond with the
following points and questions, which she feels, were not answered as fully as she would
have liked.
Mrs Wishart's direct comments and questions are in bold italics.
In response to paragraph 2 of your letter
"I understand comments made but to clarify we're not referring to brand new drugs that
haven't been tested. We are referring to drugs that have been through all their clinical trials and have proved to offer real benefits to patients in practice and are licensed in this country".
Mrs Wishart would like your full comments on this.
In response to paragraph 5 of your letter
"When was Avastin licensed in UK ?
Why have we not approached the manufacturers again as it's now been a minimum of 7
months.
When in 2007 was the request made to the manufacturers?
What is the procedure regarding "waiting time" back from the manufacturer (hardly a
robust system!)"
In response to paragraph 6 of your letter
"When a patient visits an oncologist working for the NHS, it is clear that the advice
provided by the oncologist is driven by what the NHS can offer not by what is available
through other sources. To expect an oncologist to be completely honest and free spoken
when they know it could result in the patient being in dispute with their NHS Trust is not
possible. None of the information relating to private licensed drugs has ever been
forthcoming in my (Mrs Wishart's) experience and it's only when I (Mrs Wishart) ask very
direct questions that I get any response. To cut a long story short the Scottish Government are putting the oncologists in an impossible position".
Mrs Wishart would like to ask for your full comments on this.
In response to paragraph 7 of your letter
"We agree the NHS should be free at the point of delivery, it's the treatment not available
on the NHS but is licensed and proved to offer real benefits to patients that I want to pay
for along with the drugs available on the NHS. Nicole's point is correct and this right should never be taken away from any British Citizen".
Mrs Wishart would like your full comments on this point.
In response to paragraph 7 of your letter
"Nicola points out patient safety and good clinical governance and gives an example. Our points would be that if a co-payment system was introduced then the NHS oncologist would be able to speak more freely and openly with their patients and it would only be with their recommendations and advice that a regime of drugs would be considered e.g. Taxol and Avastin which is widely available all over the world and the clinical trials for this finished in 2004. Therefore, removing any safety issues that she highlights. Nicola has commented that it may be not in the patients interests to take a drug that has not been recommended by the SMC, I have 2 points to raise here
Point 3. 1 Various drugs that can help mets in breast cancer have been licensed in this
country but have not been anywhere near the SMC to consider. If a drug is licensed surely along with your experienced oncologist you should be able to decide if you want to use it or not.
Point 3.2 Just because the SMC do not recommend a drug does not make the drug
unsafe, if it's only going to help 30 out of 100 patients it may not be cost effective to try it
on everybody therefore they may recommend that the NHS do not use the drug purely on a cost analysis. However, everybody should have the choice and the right to pay for this treatment privately just in case they are one of the 30 and still get the NHS treatment which they are entitled to and which Nicola points out in this paragraph. Nobody should be allowed to play god with Diane's life she should be allowed to make her own decisions and not have to die prematurely because the drugs are not available on the NHS".
Mrs Wishart would like a full and clear response to these points.
In response to paragraph 8 of your letter
"Under the freedom of Information Act we would like to request that a full copy of the
committee report published on the 18th June 2008 be sent to us".
"Finally, the co-payment system is being reviewed in England and Wales later this year if
the outcome is successful and the public are allowed to co-pay surely the Scottish
Government will have to address this matter or do they want people relocating to Berwick in order to receive what they so rightly deserve.
Scotland has always prided themselves on being ahead of the rest of Britain when it
comes to recommending a drug be used on the NHS surety they should be reviewing the co-payment system if not before at the same time as England and Wales. Why are we not doing this?
On Good Morning Scotland 0210712008the programme suggested that the European
Commission is expected to rule that a resident in the EU who has to go to another country in the EU for medical treatment that is not available in his/her own will be able to claim back treatment costs from their own government. Would like Nicola to expand fully and in layman terms what this expected change in the rules is please?"
"We have obviously got a lot of questions and comments needing answered, we do not
feel that the questions on the original letter have been answered fully and would ask that
Nicola revisits these questions along with the above and gives a full and clear explanation in layman terms without any political jargon.
I look forward to an urgent response".
I would be grateful if you could address these points on behalf of my constituent and I look
forward to your response.
Yours sincerely1-
Jim Tolson Liberal Democrat Member of the Scottish Parliament for Dunfermline WestII
Dunfermline West Constituency Office: 2nd Floor, 1High Street, Dunfermline KY12 7DL
Te101383 841700 Fax 01383841793 E-mail: jim.tolsoll.msp@~cottish.parliament.ukI
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