We are Macmillan. Cancer Support
This is where you can find out about all the amazing things going on in the Online Community. It's where you'll find news about events and awareness months; ways to get involved with Macmillan and up-to-date campaigning news from Macmillan HQ.
Thanks so much to all of you who came to our web chat with Paul Burstow MP, we had an amazing turn out and the Minister really enjoyed himself. He really respected your honesty and found the standard of questions to be very high.
Unfortunately because there were so many excellent questions the Minister just didn't have time to answer them all. I have sent the ones we didn't have time for to the Minister and we will be publishing his answers here in a few weeks time.
Please note that we have grouped questions of a similar nature together to save time and avoid repetition, so please do not be offended if you don't see your exact question.
I'd also like to welcome all of our new members who came to the Community in the days prior to and after the event, I hope you'll find the Community a supportive and friendly place.
Our next webchat will be in a couple of weeks, so watch this space for more details.
Q: Will the Minister be making sure the Social Care Bill addresses the needs of cancer survivors?A: The government will be publishing a white paper on social care this autumn which will build on our commitment for a more personalised service and cancer will not be overlooked in our thinking about the role social care plays.Q: There is a lot of confusion over how the Cancer Drug Fund will be allocated. Now the consultation period is over, has this been decided, and can we be assured every applicant will be assessed in the same way and that we won't be subjected to the postcode lottery we've had to put up with in the past?A: The consultation has closed we are now considering the responses but our aim is to ensure that there is consistency across the country but with local decision making.Q: The Cancer Strategy says the Big Society approach to tackling cancer will include a national partnership with employers. This will mean help for employees affected by cancer to stay in or return to work. But what role will the NHS play in helping people affected by cancer to remain in work?A: The Government is committed to continuing the development of the national survivorship initiative in conjunction with Macmillan. One of its aims is to enable people both to return to work and where possible stay in work by ensuring that the care and support that's provided is personalised.Q: In its first year the Macmillan Quality Environment Mark has already demonstrated its ability to benchmark a quality standard for the patient experience in cancer facilities, led by people with cancer themselves. What can the minister do to encourage the NHS to make use of this lever for change, either as hospitals seeking to improve the quality of their physical environments or as commissioners requiring evidence of improved outcomes and patient choice from cancer service providers? A: This is a valuable tool that demonstrates how we can ensure that quality is at the heart of everything that the NHS does. The Government is determined to focus on outcomes in healthcare. That means patient experience, and quality of life as well as improving survival rates.Q: The Government is about to launch the Warm Home Discount scheme to help people in fuel poverty pay their energy bills. I was wondering whether you have made any representation to the Fuel Poverty Minister, Greg Barker, about the particular needs of vulnerable cancer patients - notably terminally ill cancer patients - and, if not, whether you might be willing to do so?A: The consultation on the warm home discount scheme closed just 6 days ago. No decisions have been made but I know that Macmillan has been lobbying hard on this issue the scheme will be launched this year and suppliers will be required to spend up to £1.1 billion helping around 2 million households per year. I will certainly make sure your comment is fed back to the relevant minister.Q: Why is cancer screening still dictated by age, when evidence suggests that younger people are being diagnosed all the time? Earlier diagnosis does mean less surgery for most patients. What can be done to change this?A: We do rely on both the advice of experts and the evidence to determine the age at which screening activity takes place. We are extending breast cancer and bowel cancer screening to an earlier age and will continue to review the evidence and take advice.Q: How are you going to raise the awareness for ovarian cancer and improve survival rates?A: Improving awareness of ovarian cancer: As part of the new cancer strategy we are increasing access to diagnostics for GP's. In particular this includes more access to ultrasounds.Q: I had to fight tooth and nail to get benefits; I had to give up my job as I was terminally ill. Why make this process so distressing in these situations, I was referred to like I was a fraud and had to have a medical to confirm my diagnosis. This is not right please change this!A: You're right it shouldn't have to be such a battle to obtain benefits you're entitled to. I know that Macmillan does a fantastic job of assisting people to obtain the benefits they're entitled to. I will continue to work with ministers in DWP to ensure that obstacles to obtaining the right benefit at the right time are removed.Q: There are about as many patients suffering from late radiation effects as those who have Crohn's disease. Specialist provision and clinical facilities for patients PRD are really poor. How will the government facilitate better provision and a wider availability of access to specialist GI consultants?A: This is an important issue and forms part of the survivorship initiative. A commitment in the new strategy is that we will develop specific payments for these services to encourage both hospitals and commissioners to provide these services.Q: What is the Government doing to help raise the profile of volunteering and the numbers of volunteers within health and social care?A: The government recently published a green paper on the issue of giving. The role of volunteers in community services and the national health service is invaluable in many communities they play a key part in delivering vital social and emotional support. I am working with ministers across government to ensure government policies support and value the role of volunteering and encouraging partners in local government and the NHS to look for opportunities for volunteering.Q: Please can the Minister explain how he thinks that the move towards GP Commissioning will help to reduce inequalities in outcomes. With the abolition of NICE, isn't there a risk that the 'postcode lottery' of what people can access will only increase? Many thanks.A: NICE is not being abolished. At the moment NICE could be abolished at the stroke of a pen, this government will put NICE on a statutory basis to protect its independence and extend its role to social care as well.Q: Compliance with NICE Improving Outcomes Guidance (IOGs) for cancer was seen as a must-do. Quality Standards will not be mandatory. How do we ensure that providers comply with the new standards and that clinical quality is not lowered?A: By a relentless focus on outcomes, both clinical and the reported experience of patients and by ensuring that the NHS only has competition that is about quality not priceQ: How can we share examples of best practice?A: First, by greater openness about the results that are being achieved in different areas so people can see who's doing well and who can do better. and then by making sure that the best practice is widely shared an taken up by those areas that need to do better. The National Cancer Action Team and NHS Improvement have a major part to play in this.Q: Despite improving cancer services, we are still well behind the rest of Europe when it comes to early detection. Are we learning any lessons from their successes, and what measures can we take/ will be taken to ensure diagnosis and subsequent treatment happens sooner?A: Early diagnosis is a key part of the government's new outcomes strategy. We're working very closely with Australia, Canada and Sweden to learn from their best practice. Part of this is about raising awareness of signs and symptoms of cancer so that people see their GP earlier and that GPs have the confidence to make use of diagnostics.Q: I had to leave a full time job and move to come and look after my terminally ill father. Because I made myself jobless I was entitled to no benefits at all. I had to wait for 8 weeks before I got accepted for £53.00 per week as a carer. I thought that I was going to loose my home. More help should be made easily available for people who are leaving work to do caring.Q: Is the Minister personally committed to ensuring every terminally ill cancer patient has 24/7 access to a community nurse if they need one?A: The government is determined to ensure that people have a real choice about where they receive both palliative and end of life care. That as part of the end of life strategy, local commissioners need to ensure they have the right mix of services, including community nurses.Q: I like the idea of instant results from scans in Australia. It must massively reduce anxiety. How can we introduce that here?A: We are measuring the length of time it takes and this information will be available both to patients and to commissioners helping to increase the pressure for improvement of the sort that you describe in Australia.Q: Mr. Burstow do you get involved in education at all especially when students/patients education is affected by having treatment. I recently worked with a patient who was told she would have to pay for education once she turned 19 although she had missed 2 years of schooling through no fault of her own?A: With regards to young people missing out on education - I recently visited the Royal Marsden where their young people's unit is very much geared up to the provision of education and supporting young people in their learning during their treatment. I will also make sure that The Minister for Education Sarah Teather is aware of your pointQ: Mr Burstow, can you tell me why commissioning is being left to GPs only? They make up only a small part of the health care professionals who manage care for patients. As a cancer nurse of nearly 30 years I know there are nurses out there with vast amounts of experience and knowledge - and often better strategic skills, and they should be involved in the commissioning process. A uni-professional approach to commissioning is very narrow minded in my view.A: The media reporting of the government's plans might lead you to think the only people who will be involved in commissioning in future will be GP's. This is NOT true. The legislation we published yesterday makes clear that other clinicians including nurses have to be involved in designing care pathways and commissioning activity.Q: I'd be interested to be informed of how high the issue of hospital car parking charges is on the agenda.A: The government has no plans to instruct hospitals to scrap car park charges. However it is important that hospitals benchmark their charges and concessions with one another to make sure that they are fair.Q: Some doctors seem to think that because they can't do something, it can't be done. People need to understand they can get a second opinion - and a third - from anywhere in the country, including cancer specialist hospitals like the Royal Marsden. Can the Government get involved in publicising this to improve outcomes?A: There's a wider agenda here about patient empowerment which this government is pursuing. We want to see the idea of "no decision about me without me" becoming a governing principle of the NHS and clinical practice so that the patients feel able to be a partner in deciding the right treatment, care and support for them.Q: Mr. Burstow, do you have any words for Mr. James Golding, cycling across America raising funds for Macmillan?A: Fantastic work James. Good luck and keep peddling!Q: The Government has talked about the need to create a Big Society and for the role of charities to grow to replace the role of the state. How does the Minister think Macmillan's role will change in this big society?A: Macmillan are one of the Department of Health's strategic partners. They play a critical role in both challenging us and also championing innovation in cancer services and are a role model for other charities leading in other disease areas.
Last week Clinical Nurse Specialist Kate Goldie was in our chat room answering your questions about palliative care. Thanks to all of you who came along with your questions, the transcript is below for those of you who were unable to join us. If you have any questions about palliative care or anything else, then please contact our Support Line.
Q: What should expect from my local health authority in terms of palliative care?A: When someone is at home, the G.P. should be responsible for coordinating care and support. This can be from district nurses, Macmillan nurses or local hospice. Personal care usually comes from the social work department. In some areas additional support is available through voluntary agencies charities e.g. crossroadsQ: Can you tell me the definition of ‘palliative care’?A: It sometimes differs a bit. Broadly though, it is the management of disease & symptoms when a cancer can’t be cured. The emphasis should be on quality of life.Q: Who gives palliative care?A: Palliative care can be given by a hospital, a G.P. or at a hospice as an inpatient or at home. You can get palliative treatment to control your disease, and there are palliative care teams attached to all hospitals/GPs.Q: Who defines quality of life? I ask because after two doses of chemo our first oncologist decided that my husband had no quality of life, and suggested that the 2nd line of chemo was "probably not worth it". We insisted and he is still here doing well with his liver mets gone.A: It can differ from person to person. I suppose it depends who gives the information, and for some people, knowing that there are options available to improve their quality of life is more important than continuing with any treatment.Q: I’m nowhere near needing palliative care yet (I hope!), but having been in the chat room for 18 months for now, I have seen many cases of it talked about. One thing that really bothers me is the number of people who, here in the 21st century, still have inadequate pain control. We see carers desperate to find ways to help their loved ones. Yet others seem to have wonderful pain control from “pain specialists”. I understand that this is a totally separate department in some hospitals, and these specialist doctors and nurses know ways to alleviate pain much better than the average doctor and nurse. Is this true – and if so how can we find them, as well as spreading the word that they exist?A: From people we speak to, this can sometimes be the case. It may be that knowing where to find these services could be clearer. We certainly do this on the helpline 0808 808 0000 and hopefully with better promotion of palliative care this will get better. The provision is different in different areas, and can be hard to find at times, information is available on our website.Q: When is it decided that palliative care is the only option left?A: When treatment is no longer controlling cancer the treatment becomes palliative.Q: What is involved in palliative care?A: Palliative care can involve treatments at hospital, chemotherapy, symptom management, and in many cases the use of complementary therapies to help people manage their disease.Q: I have a friend who is on tablet chemo, with a secondary tumour and cancer cells in the tissue in her left armpit. They say they won't be operating - does this sound like palliative treatment?A: At present your friend is having active treatment.Q: My mum is in palliative care, and is taking something called oxycodone. Is there anything else she could be taking, because this is making her sleep all the time, and miss out on her last few days/weeks of life?A: Sometimes it is necessary to give medication that makes someone sleepy to help control their symptoms. This can unfortunately be distressing for relatives/carers.Q: We have a Macmillan nurse coming round on Thursday. What help will they be able to offer the family?A: Macmillan nurses offer symptom control, emotional support, and can help make sure that necessary support is arrangedQ: How do you know when someone is in their final days?A: Like many aspects of palliative care, it differs from patient to patient. There is information on our website, or you could call and speak to one of the nurses on 0808 808 0000. It is difficult to predict how it will be for each person.Q: What can be done to help young children when their mother is poorly?A: There's some information here about talking to children about cancer which might be useful. Macmillan nurses can support the families as well depending on their needs.Q: I work for a palliative care support team as a Healthcare Assistant. We look after people who want to die in their own home. It's a very sad job, but I love it, as it's very rewarding and I meet some great families. We are with them as long as most people would like to die at home, with family and friends.A: In many cases people do want to die at home, but sometimes as their condition changes they may decide to go to a hospice. In many areas there is good support, but unfortunately this differs greatly throughout the UK. I worked in a hospice and the most important thing is that someone’s wishes are known so as much as possible they can die where they choose. With the appropriate help and support.Q: What about bereavement counseling? Some of us spent so much time looking after the extended family during the illness and passing, we are now feeling somewhat abandoned.A: There are many different ways to access bereavement support, sometimes formally or as part of a group. Again, this is different depending on where you live and what you are looking for. There is some information here.Q: I hope it is many years before I need it, but being single and having no family within 400 miles, I will need a hospice if the time comes. I'd much rather be in a hospice than at home with nurses coming in.A: It is important that people can die where they choose, it’s important that this is documented especially when you have no family. Please see this information about putting your affairs in order which includes a section on making choices.We have a campaign for 24/7 community nursing, please sign up if you would like to.The campaign is to ensure that everyone has the choice to die at home should they wish to, so please think about signing up. It doesn't take long and is free.
The way that the welfare system works is changing. This could mean that many people with cancer , like you and your family will be forced into poverty.
Please sign our petition to help us lobby MP's and Lords before they make important decisions about this matter.
To remind you, our calls are:
You can find out more about the campaign here.
If you're having financial difficulties at the moment, you may find our financial information helpful, alternatively please call our Support Line on 0808 808 0000 where a benefits adviser will be able to help you work out waht support is available to you.
Tell as many people about this petition as you can, we really need your support.
thinking recently about ‘lurking’ – is it a good thing for us to have lurkers
on the Online Community?
never heard of the term lurker, you might be forgiven for thinking that it
refers to something pretty sinister – and it’s true that many people think it’s
a negative behaviour. Lurkers are people who spend time on internet forums or
chatrooms, reading what others write, but not actually posting anything
sound harmless enough, but the word ‘lurker’ itself is a clue to the fact that
not everyone thinks so. It conjures up images of a threatening presence hiding
in the shadows and watching what other people say.
On the one
hand, this is understandable. Online Communities like ours rely on people
opening up and sharing their stories. Being honest about feelings and
experiences that you might not even be able to discuss with your closest
friends can leave you feeling very vulnerable. And if you become aware of
someone on the site reading those stories and not sharing anything in return,
it’s natural that you might feel a little uncomfortable.
at the Macmillan Online Community, we aim to support everyone affected by
cancer. So it’s really important for us to remember that those people who
aren’t posting are still likely to have a cancer experience – and that we
should also consider their needs.
isn’t posting on the site, does that mean that they aren’t getting anything out
of it? I don’t think it necessarily does. Quite often, I see that members
create an account some weeks or months before they first post. Sometimes they
say that it has taken them a long time to get up the courage to write something.
Other times they mention how much it has helped them just to read about other
Even if there
are some members who never decide to post, if this site is helping them feel
less alone, it’s still doing its job.
So, the next
time you notice an account with no posts – or see someone silently present in
the chatroom – please remember to make them feel welcome, but don’t push them
to join in. They’ll probably do so when they’re ready.
Or, if you’re
one of those people who reads this site, but hasn’t yet posted anything – don’t
worry, you’re very welcome here.
Now, if only
we could think of a more positive word than ‘lurker’…
What do you think? How do you feel
when you see behaviour like this on the site? Did you read posts for a long
time before contributing yourself?
If you’ve been affected by cancer, Macmillan’s team of
experts is here to support you. In the Meet the Team series on the Community
News Blog, we’ll be introducing people from different parts of Macmillan and
asking them all about the wonderful work they do.
Barnes is Lead Caseworker in our grants team. A Macmillan
grant is a one-off payment to help people living with cancer meet needs
arising from their condition.
Tell us a
bit about your job.
I manage a team of seven people who process applications for
Macmillan Grants. Macmillan have given grants since 1924, so it’s a very
well-established service! We’re also one of the top ten grant making
organisations in the UK, so it’s great to work here.
might you deal with on a typical day?
We get 6-700 applications a week, and they all come in by
post, so, as you can imagine, there’s a lot of post to go through in the
My team checks that each application meets the financial and
medical criteria, and that the application has been filled in correctly. Then
we make a recommendation about whether a grant should be given and then pass it
on to the team of assessors for confirmation.
There’s a lot of data entry, but also a lot of reading
people’s unique and individual stories.
No two applications are the same. There’s a huge range of ways in which cancer
can affect different people.
I didn’t have
personal experience of cancer before I came to work here, and the sheer number
of cancer types and the variety of experiences people have has been a
of things do you give grants for?
It has to be for a need arising from a person’s cancer, but
that can mean quite a lot of different things.
65% of grants
are either for clothing, travel to hospital, or heating. People often need new
clothing because they have experience a change of body size or shape. For
example, steroids can make you put on weight, while nausea or digestive
problems can make you lose it. Heating can be a problem, as people having
chemotherapy can become more sensitive to cold.
But we also
give grants for more unusual things – for example, one elderly gentleman with
terminal cancer had been a Spitfire pilot. We gave him a grant so he could go
to his squadron reunion one last time and say goodbye.
get a Macmillan grant?
You need to be living with cancer and to meet certain financial
criteria. Your application will need to be signed by a health and
social care professional, such as your doctor, district nurse or Macmillan
The grant is suitable for a one-off need. Some people really
have no money at all, and in those cases, we would refer them to our benefits
advisers, to try and find a more long-term solution.
the best thing about your job?
Being able to
help people in a very real way – what we do makes a huge impact to improve
quality of life for people with low incomes.
when we get thank you letters and cards, which really show what a difference
the grant had made.
got a grant for an electric fishing trolley, as fishing with his friends was
his main social activity and he could no longer carry all his equipment. He
wrote a letter of thanks that was full of so much enthusiasm and happiness.
your ideal weekend.
interested in Georgian history, so it would be wandering round a Georgian
stately home with a fantastic kitchen and gorgeous gardens.
I’ve been to the Hellfire Caves in Buckinghamshire, where the Hellfire Club
used to meet, and to Kensington Palace. I find that you read about the history
in books, and then you visit the actual places and it brings it all much more
If you have any questions about our organisation our Macmillan team would love to hear from you
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© Macmillan Cancer Support 2010
what are these?