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All-Party Parliamentary Group for Brain Tumours Meeting

Andrew Selous MP APPG April 2014

The All-Party Parliamentary Group for Brain Tumours met on Tuesday 8th April in the House of Commons. Chaired by Andrew Selous MP, the meeting focused on issues surrounding quality of life for patients diagnosed with brain cancer and the importance of early diagnosis. The meeting was well attended by Parliamentarians, Brain Tumour Research member charities and activists, producing a fantastic discussion with stories from patients, carers and relatives on how they have coped with the illness. The meeting discussed the recent report by the Brain Tumour Charity, an excellent piece of work for which we congratulate them.

The meeting also featured a speech by Jane Ellison MP, Parliamentary Under Secretary of State for Public Health, whose brief in the Department of Health covers brain tumours. Ms Ellison was keen to stress the considerable interest in brain tumours within Parliament and praised both the large number of charities and individuals who have engaged with their local MP on the issue. Brain Tumour Research would like to thank all the member charities who have engaged with their local MPs and urge everyone to continue to do so. We have produced a transcript of Ms Ellison’s speech for all those who were unable to attend the meeting and we are very interested in your assessment of what was said.

Brain Tumour Research would like to thank Ms Ellison for attending and speaking at the meeting, as well as Andrew Selous MP for chairing the meeting and all those who attended. The APPG is an invaluable mechanism to share ideas and present our case to Parliament and Brain Tumour Research looks forward to continuing to support the APPG.

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Jane Ellison’s Speech:

Thank you for asking me to come here.

And, Andrew is right, it’s a very well supported parliamentary group, and actually this is a subject that gets a lot of attention in Parliament. My colleagues are very active in raising it with a number of charities in this area and they’ve all got good spokespeople here in Parliament. My life – like many of yours I suspect – has been touched by this disease. My friend lost his father very quickly to it when he was in New Zealand and John was here in the UK and had to the journey back half-way across the world. My life has been touched by this world. I get many, many letters about this subject and I always check and get the chance to read, not just the letters from my colleagues and Parliamentarians, but from their constituents that they have forwarded. I think that’s given me a good sense of the impact of this disease on people’s lives.

The reason why the Public Health Minister needs to respond, and why it sits with me, is essentially that although the NHS is the clinical side of this, there are obviously things we do around symptoms and around an interaction with the NHS, which is where ministers come in. The NHS is independent of ministers. One of the reasons groups like this are so important for is giving us this opportunity to communicate to clinicians, and allow Parliamentarians speak on behalf of their constituents. I think how Eddy just spoke catches something really well, that often there is a good message about the purely clinical care, and often the bit that Parliamentarians speak about on behalf of constituents is the wrap around element. So some of that sits in the portfolio of being a Health Minister, all of this gives me the opportunity to listen to you and tell Parliament about your concerns around this issue. Also importantly for me to be able to convey how Parliament feels on behalf of its constituents to the NHS about this care, in particular the aspects of the long term care, which do tend to be raised actually more than the clinical care, although there certainly some important things there.

So I hope that I have just given you some context to how meetings like this and how useful they are and how we can make the most of them as ministers to move things forward.

As the Brain Tumour Charity’s report has highlighted, obviously the best way to reduce the impact of brain tumours is to identify and diagnose it early. That’s something we look to understand more – saying it is the easy bit, doing it is the hard bit – as I think, again, testimony is witness to the fact that too often it can look like a death sentence. This is a real problem I think, and I’ve talked about this with the Royal College of GPs, which often comes up in debate. So diagnostics are really important, getting people to think about the unusual things as well as the more routine things. I think because we talk about cancers, including brain cancers, so much we imagine actually people see them all the time. The reality is the average GP will maybe see 80, something like that, of all cancers in a year, certainly usually it can be very small numbers indeed. I think that’s important to remember the context of GPs diagnosing the condition, so the opportunity to raise awareness is really important because this isn’t something to walk through the door of the GP surgeries all the time. And again that’s a conversation that we regularly have with GP leaders.

The government has spent – awarded – £ 450m of financial commitments to look at early diagnostics. But we are also doing some specific work to look at early identification of brain tumours. One of those specifically around that GP awareness is that we funded the British Medical Journal learning to provide an e-learning module for GPs wrongly diagnosing osteosarcoma and brain tumours in children, and that’s been really since 2012. NICE have also issued referral guidelines since 2005 and that’s intended to support GPs. So NICE have basically given us the ideal of very high standards to which everyone should work. They’ve been doing that since 2005 and that’s looking particularly at symptoms of patient referral for those more specialised interventions as quickly as possible. Now NICE is currently in the process of updating them which is a really good opportunity, a good moment, to feed into that. So I would urge this group, the charities and all connected with the cause to engage with NICE because they’ll be examining the evidence that’s there and some of these reports, bringing patient experience right up to date. So I would urge you to actually engage with that and feed that in.

We also know that raising awareness in patients and parents – in the case of children – as an enormous potential for that early identification. Maybe you will be aware of the good work of the Headsmart campaign and I met with another colleague of Andrew’s and mine, Dominic Raab MP, recently and the Headsmart campaign to talk about and to understand their program of awareness and the good work they’ve done. There has been some really good clinical work backing it up around symptoms and essentially how to eliminate the symptoms that aren’t cancer to try and to make people much more aware themselves about answering those questions.

So one of the things I gave a commitment to in questions last week was that would I like to provide all the Health and Wellbeing boards with details of trying to get the Headsmart campaign material. The material is very user friendly and they are very happy to provide it to any schools, to local authorities, to clinical commissioning groups or anybody who could find it useful. So for any of you who haven’t, if you are a school governors or on a Health and Wellbeing Board or linked to any group or you think would find that useful to have that material to hand or to consider disseminating it, Headsmart would be happy to supply that material. As I say, I will be writing to Health and Wellbeing boards to make them aware of how they can do that and where they can get it from. I am also, as an individual MP, going to be including details again how to get this material in my newsletter to schools. This is a termly newsletter and I know Andrew has taken similar action in his constituency and we have tried to draw this to the attention of our colleagues.

In terms of the cancer patient experience survey, which I think is one of the very good ways that we get some of that feedback, particularly around the non-clinical aspects of care and support. It comes up a lot in debates in the House. NHS England have continued to run the Cancer Patient Experience Survey, that’s very much about catching the good in some areas and others that are not so good, about all patients experience of the care it gives.

Whilst we know that 88% of cancer patients report their care as either being excellent or very good, there’s still much to do. Quite a lot of the responses in some of the some areas of the survey fall well below that 88% and in some cases these are really not good enough. We are looking forward to seeing results from this year that the All Party Group will look at, the latest Cancer Patient Experience Survey is under way and NHS England will publish those results later in the year. You might be interested to know what they do with those results, because one of the reasons I think it’s such a good survey and I’m very keen for the Minister to see it and continue with it, and I know that Parliament repeatedly says in many debates that many Parliamentarians find it a very useful survey, is what they do with it. They don’t just publish it and then leave it out there, they actually use that survey to look at what the best performing trusts do on cancer and across a range of all those measures and they send teams of people into the poorer performing trusts, find out what’s not working there in the area they’ve got very poor scores and they actually actively try to use the best practice for the best performing of that trust to inform the practice in those that are least good. So it is a direct annual transfer of practice from the best to the least good, and for that reason I think, it’s such a direct and such a positive intervention and it’s one of the reason why this is very important part of responding to a lot of the challenges in the report of Brain Tumour Charity.

I do obviously congratulate the Charity on producing its own bespoke cancer patient experience surveys, and again it’s a really useful tool in getting a further insight into the patient experience in the NHS. I’ll certainly make the point of drawing NHS clinical leads attention to what you’ve discovered. One of the areas both surveys, and patient experience we have just heard, point out as hugely important is the patient experience of diagnosis. We know that communication information exchange between patient and staff is key and it is repeatedly debated. It just comes out time and again that the general experience in how they were dealt with and how their family were dealt with and the way that they were supported though an absolutely dreadful time, is actually really important to how they feel about their chances to make a recovery and how they actually begin their pathway to recovery.

So I just wanted to tell you about a couple more things that are happening on the national scene. We have acted to improve the patient experience nationally by implementing what we call a Cancer Information Prescription Programme and expanding a lot of NHS jargon into a connected National Advanced Communication Skills Programme. Basically, all things designed to make you better and communicating in difficult times in a sensitive way that responds to the patient’s needs. And that’s helped thousands of clinicians to work more effectively with patients. We also don’t overlook the importance of carers and the Care Bill going through Parliament at the moment, as someone has mentioned, the Department and NHS England are currently developing an action plan to support carers and we very much include cancer cares as part of that world. We do accept the need to do more in terms of the supply of information to patients in the form of care plans through the National Cancer Survivorship Initiative, Sean Duffy, who is the National Clinical Director of Cancer, and Ciarán Devane, the national Chief Executive of Macmillan Cancer Support, are currently developing a refreshed two-year Cancer Survivorship Work Programme. That will include a number of interventions that are basically designed to provide patients with more information about what they can expect about their recovery, the support they need, so they can have a proper holistic needs assessment and a cancer care review. They are working their way to getting some good time to feed into that, and Sean and Macmillan have got that work already in play.

The last thing I’ll just draw your attention to before we need to go and vote is that NHS England has just published a service specification for brain tumours, which aims to deliver the care we’re talking about. High quality care for each patient and again I think that feedback from this meeting and the report that you’ve done means this is a good moment to feed that back into NHS England. I will undertake to do that from this meeting, to make sure we actually understand how much people value that and the role it has to play.

So that’s just a bit of some of the things under way in terms of the NHS are doing and the way the Department is interacting with them and directing the NHS. I just what to give you my assurance this is a really high priority and as a Government we are committed to doing far better than we’re doing to the country on cancer. We want to become one of the best countries in Europe, and at the moment on all cancers we are not. So there’s a really big Government commitment behind this and it is one of our top priorities as Ministers and we are working closely with the NHS on this. I really thank your views as charity for bringing this to our attention. It’s another useful opportunity for me to go back to the NHS clinical leadership and say this is a really big fight right across the board and for them to be able to respond further to that, and I’m certainly happy to undertake that the information to the All-Party Group as they respond to this report.

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Wear A Hat Day in Parliament

Andrew Jones, Member of Parliament for Harrogate and Knaresborough, spoke about Wear a Hat Day and the aim to increase funding for research into brain tumours in Parliament on Thursday 27th of March. During the Business of the House debate Mr Jones raised the issue of brain tumour deaths and research funding, highlighting Wear A Hat Day. Mr Jones also praised the Brain Tumour Research member charity PPR, who work in his constituency, and urged the house to organise a debate on “the biggest cancer killer among under-40s”.

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Andrew Lansley MP, the Leader of the House of Commons, responded to Mr Jones by underlining the Government’s £150 million investment in proton beam therapy centres while acknowledging that brain tumour awareness and lack of treatment options was a continuing issue. Mr Lansley assured Mr Jones he would pass on his concerns to the Department of Health.
Brain Tumour Research would like to thank Mr Jones for his support in Parliament and on twitter, where he and his office posted a picture for Where A Hat Day. Raising awareness about the level of brain tumour research, currently less than 1% of national cancer funding, is a fundamental step to ensuring that the biggest cancer killer under 40 gets the funding it deserves and we are glad that MPs have joined the cause.

Make sure your MP joins Wear A Hat day by contacting them on Twitter or Facebook!

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Get Your MP Involved in Wear A Hat Day

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How many MPs can we get involved in Wear A Hat Day?

Please send your MP an email – their address can be found here by putting your postcode in:

http://www.parliament.uk/mps-lords-and-offices/mps/

Tell them your story and why you are involved and then add the following:

‘This Friday, 28th March, Brain Tumour Research is organising our annual brain tumour awareness day Wear A Hat Day www.wearahatday.org

Please support our campaign against the biggest cancer killer of children – indeed of the under 40s.

Brain tumours have one of the lowest survival rates of all cancers – just 19% within five years of diagnosis compared to 51% for all cancers. They take more years of life on average than any other common cancer – 20 years, compared to 11.8 years for lung cancer and 6.1 years for prostate cancer, yet receives less than 1% of the national spend on cancer.

Your support for our cause will be very much appreciated’

You can also take part by joining in the increasingly popular #HatSelfie social media trend! Post a picture of yourself in a hat on your Twitter feed, web site and Facebook, saying something along the lines of “I am supporting @braintumourrsch and their #WearAHatDay this Friday, March 28th”.

Please also make a text donation by sending the words WEAR12 £3 (or another sum to a maximum of £10 / text) to 70070. We’d love to see the reply text alongside your #HatSelfie!

 

 

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Grahame Morris MP speaks on brain tumour care in Westminster Hall debate

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Brain Tumour Research would like to thank Grahame Morris MP for being the only MP to raise the issue of brain tumour patients in the Cancer Treatment and Prevention debate in Westminster Hall on the 11th of March.
Mr Morris, a long-time supporter of better treatment and research funding for brain tumours, spoke passionately about the work at the University College London Hospital Neurology and Neurosurgery department. The focus of his speech was on the decision to take Gamma Knife treatment away from the hospital and how this decision had made a “mockery” of the Health and Social Care Act of 2012, with its brief to ensure patient choice in the NHS. The decision was taken by NHS England to stop treatment with Gamma Knife technology at the centre, meaning that rather than being treated at a world class institution by experienced staff, patients were forced to choose a new centre where they would start the treatment process from the beginning.

Brain tumour patients have a worse experience within the NHS than any other cancer and the debacle of UCL demonstrates this perfectly. There are too few centres in the country that can provide state of the art treatment for brain tumours and indeed there is reason to believe that this number may soon drop by three quarters. The Daily Mail, amongst others, has reported that 18 of the 25 centres that currently provide targeted radiotherapy treatment for brain tumours are to be closed in a needs assessment review. At a time when research into brain tumours is less than 1% of the national spend, meaning less new treatments and clinical trials, the Government and the NHS are planning to limit the number of centres brain tumour patients can receive the only treatment that can cure them.

Jane Ellison MP, The Parliamentary Under-Secretary of State for Health, was present at the debate and has agreed to respond in more detail to Mr Morris’ statement. Brain Tumour Research would urge the Minister to support the goals stated in our epetition:
• Prioritise deaths under 75 in the government’s cancer funding
• Devote a consistent or growing absolute figure to brain cancer research
• Introduce a national register of site-specific cancer research to track all research grants and research work, ensuring transparency of funding arrangements
• Consider the question of curing brain tumours in terms of research spend necessary for other cancers: around £30-£35 million per annum over a ten year time-frame

http://epetitions.direct.gov.uk/petitions/55378

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Andrew Selous – Cancer Priorities Debate – February 2014

Andrew Selous MP

Andrew Selous MP raised the issue of funding for brain tumour research during the House of Common’s debate on Cancer Priorities on the 13th of February. Andrew, who is the Chair of the All Party Parliamentary Group on Brain Tumours, gave a passionate speech outlining the need for greater funding into brain tumour research and how the cancer had become “the poor relation” of research funding.
The debate was arranged to consider the All-Party Parliamentary Group on Cancer report on cancer priorities in the NHS and the series of recommendations set out for the Government to reach its target to save an additional 5,000 people every year by 2014/15. Included in these recommendations was the need for a greater focus on research and this was a point that Andrew Selous emphasised in his speech, highlighting that only £1,400 was spent on research for every death from a brain tumour compared to £7,700 for leukaemia.
Andrew began his speech talking about Nicole Witts, a constituent of his who first raised his attention to the current state of brain tumour research funding. Nicole a brain tumour patient and great supporter of ours, runs our Umbrella Group Head 1st. He emphasised that brain cancer was in the small minority of cancers becoming more prevalent and seeing no drops in mortality rates. During his speech Andrew paid tribute to the work of a number of organisations and singled out Brain Tumour Research in particular for the work put into July 2013’s report on National Research Funding. Jane Ellison MP, The Parliamentary Under-Secretary of State for Health, was also present to underline the Government’s commitment to improving cancer survival rates and explained the Government’s policy to ring-fence funds for cancer and an improvement in early diagnosis.
Brain Tumour Research would like to thank Andrew Selous for being a voice for brain tumours in the debate and for his hard work as the All Party Parliamentary Group Chair.

The full transcript of the debate can be found here: http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140213/debtext/140213-0003.htm#140213-0003.htm_spnew3
The APPG on Cancer’s report “Cancer Across the Domains: Cancer Priorities for the New NHS” can be found here: https://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/APPG/BritainAgainstCancer2013/BritainAgainstCancer-CancerAcrossDomains-reportDec2013.pdf

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