Monthly Archives: March 2015

Parliament is dissolving – Evaluate!! E-VAL-UATE!!!

By Gus Baldwin – Head of Public Affairs

Parliament dissolves on Monday.

Macmillan’s Public Affairs Team was joking last week about what a strange expression that is.

As if, on cue, the Palace of Westminster suddenly turns into bubbling, liquidy blob and slips into the Thames – like a particularly scary scene from Doctor Who.

The last six months has also seen Parliament dubbed a ‘Zombie Parliament’ because of the lack of legislative activity and as MPs’ focus on their constituencies – so it is perhaps particularly apt to think of a Doctor Who episode.

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The imminent dissolution of Parliament has also got the team thinking about what we’ve done for people affected by cancer over the past five years, and what the future has in store.

The biggest battle we had in Parliament feels like a long time ago.  It is over three years since we took on the Government about its welfare reform proposals.

Seven thousand cancer patients who couldn’t work during treatment were going to lose £94 a week from their Employment and Support Allowance benefit under the Government’s original Welfare Reform Bill.

We felt that was very unfair and decided to take a stand.

We helped inflict three defeats on the Government in the Lords in January 2012 to get a fairer deal for all disabled people.

While the Government eventually overturned those votes in the Commons we were still able to protect cancer patients from the cuts.

We also made the case for cancer during the two big pieces of health and social care legislation during this Parliament.

Through the 2012 Health and Social Care Act we secured the future of cancer networks, albeit that they got a name-change to Strategic Clinical Networks and were given less money.

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Then with the Care Bill last year we campaigned successfully for the NHS to have a clearer role – alongside local authorities – in identifying cancer carers.

The hope is that as more carers are identified they are more likely to be given additional support to cope with the demands of looking after someone with cancer.

We’ve also spent a lot of this Parliament encouraging MPs and Lords to support the gathering and publishing of one and five year cancer survival rate data.

This new focus on outcomes has been hugely significant.  We’ve been able to shine a light on the variable performance of different parts of the country, but also see how the UK compares to other European countries – not very well is the answer!

I’m personally very proud of the way we’ve got more people affected by cancer more involved in the work of Parliament over the past five years.

The Macmillan Parliamentary Question Time is now an annual institution.

We’ve also supported more people affected by cancer to talk directly to their local MPs at Westminster and in their local constituency.

Our ‘Westminster drop-ins’ on a range of topics have also been popular with people affected by cancer, Macmillan professionals and MPs.

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Last year we also had our first ever World’s Biggest Coffee Morning in Parliament which showed just how much the people who work within the Palace love and care about Macmillan and the work we do to support them.

It’s a shame we can’t jump into the Doctor’s Tardis to see what the next five years hold for people affected by cancer.

Even without the ability to travel through time we know that the UK cancer population is going to grow from 2.5 million now to three million by 2020.

And it will be four million a decade later.

That’s why it is so important that during the General Election all political parties show they understand the looming cancer crisis and are prepared to act now to prevent it.

As the current Parliament dissolved we don’t yet know whether its successor will be a Dr Who villain, a hero or a zombie.

All we know is that millions of people affected by cancer desperately need its leadership and time is running out…

Cancer waiting times – ‘target met’?

by James Shield, Projects Manager, Cancer Population Evidence Programme

Cancer waiting times featured once again in last week’s Prime Minister’s Questions. The discussion focused on performance in one local area – but how does this relate to the national picture?

‘Target met’

Ed Miliband used all of his questions in last week’s PMQs to focus on the NHS, including one on the NHS missing the 62-day cancer waiting times target. David Cameron responded:

Let me bring the right hon. Gentleman closer to home—genuinely, to his home in Doncaster. This is the answer. Here are the cancer waiting times for his constituents: 95.2% of patients with suspected cancer were seen by a specialist within two weeks, and the target is 93%—target met; 97.9% of patients diagnosed with cancer began treatment within 30 days, and the target is 96%—target met; and 87% of patients began cancer treatment within 62 days of an urgent GP referral, and the target is 85%—target met.

It’s important here to look in detail at the most recent figures: while 87.5% of people living in Doncaster Clinical Commissioning Group who were given an urgent GP referral for cancer treatment in the second quarter of 2014/15 began treatment within 62 days, above the 85% target, in the third quarter Doncaster has begun to dip below the target:

Two month wait from GP urgent referral to a first treatment for cancer: Doncaster CCG

The story of missed cancer waiting times is also bigger than Doncaster alone, and while the overall trend is the same – a downward one – much of the rest of the country has fared worse.

Looking at the figures by Clinical Commissioning Group (CCG), more than half missed the target in the most recent quarter. England is now a patchwork of missed cancer targets (click below to view our interactive map):

And at a national level, England as a whole has missed the 62-day target for every quarter so far in 2014/15, and four quarters in a row. In the most recent quarter 68 trusts1 in England failed to meet the target, leaving more than 5,000 people waiting more than 62 days to start urgent treatment. That’s thousands of worried patients; thousands of families in unnecessary distress; and thousands of people potentially being treated too late to experience the best possible outcomes.

What explains missed cancer targets?

NHS England has previously said the failure to meet this target is in part explained by an increase in the number of patients beginning treatment for cancer following urgent GP referrals.

While referrals have continued to increase, the NHS maintained performance against the 62-day target for nearly five years despite rising referrals, and there is nothing about the past year of referral trends that is especially unusual. The number of urgent GP referrals has risen quite predictably by between 10-12% a year for the past four years, and 2014/15 has followed a fairly similar trend; annual growth is predicted to be around 14%.2 A more in-depth look will be needed to determine exactly where the bottleneck lies.

Cancer isn’t fixed

Whatever the cause, the government must take serious steps to improve performance against cancer waiting time targets. We know that being diagnosed early is essential if patients are to experience the best possible outcomes, and the UK currently lags behind much of the rest of Europe’s cancer survival rates. Put simply, cancer isn’t fixed. That’s why Macmillan is calling on the next government to commit to delivering cancer outcomes that match the best in Europe by the end of the next parliament.


  1. The 68 trusts are based on providers who give first treatment to more than 5 people with cancer in Q3 2014-15.
    http://www.england.nhs.uk/statistics/2015/02/18/provider-based-cancer-waiting-times-for-q3-2014-15/
  2. Based on data from Q1 to Q3 2014/15 and estimate of Q4 2014/15. Q4 2014/15 estimate is based on previous proportions of the annual referrals in Q4.

Getting the basics right – providing good care for people with long term conditions

“I ended up in a number of hospitals all over the country, often far away from family and friends. It was a different place each time and having to constantly start again, telling my story to new doctors and trying to build up trust, was really tough.”

Nikki, 17, Surrey

It seems the NHS and its need for reform and ‘change’ are never out of the news. In the run up to the election, and in the midst of ongoing structural reforms, it can be easy to lose sight of what really matters: Enabling people to live as well as possible through joined up and holistic care.

There are at least 15 million people living with at least one long-term health condition in England today, and £7 in every £10 spent on health and social care is spent on managing these conditions. This amounts to a staggering £75 billion per year. Long-term conditions account for 70% of hospital bed days and half of all GP appointments.

70% of hospital bed days

The Richmond Group of Charities, the coalition of 10 leading health and care charities representing people with long-term conditions, has pooled the data its members hold about how patients experience their care. Whilst there is undoubtedly a great amount of good care going on, our unique perspective and evidence sadly shows that all is not well.

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The Richmond Group report published this week (www.richmondgroupofcharities.org.uk/PDFs/richmond-group-vital-signs-report.pdf) doesn’t just highlight the all too common gaps in good care, but also shows that what would make the biggest difference largely does not depend on major reorganisations. It involves getting the basics right, such as:

  • Preventing illness wherever possible, or diagnosing and intervening early to prevent complications
  • Supporting people to manage well, through good information, care planning and shared decision making
  • Joining up services around the person’s needs, be they medical, emotional or practical, including the needs of people who care for others.

Over the next five years the real test of the Government and NHS leaders at all levels of the system will be whether the actual experiences of people using the services change, and the gaps we highlight in our report become a thing of the past. This is the benchmark by which the Richmond Group will be judging their success.

Dr Charlotte Augst – Richmond Group Partnership Manager (caugst@macmillan.org.uk)

“A diabetes education course gave me the first opportunity to really understand my condition and make decisions about all aspects of my life in a realistic way. This gave me the opportunity to regain the reins and left me in charge of my condition, rather than diabetes being in charge of me.”

Nick, 29, Cheshire

heart and cancer

When it comes to cancer and health awareness are women really from Venus and men from Mars?

Having recently carried out an evidence review examining needs of men with cancer and barriers to accessing health and social care services I was stunned to discover that, when looking at cancers affecting both men and women, men are 60% more likely to be diagnosed with cancer and 70% more likely to die from the disease.[1] When compared to women, cancer mortality is consistently higher in men across all ages and comparable cancer types.[2]

CancerMortality

From ‘The Excess Burden of Cancer in Men in the UK’1

Why is this?

No one knows for certain but one theory is that men lead unhealthier lifestyles, they drink more alcohol, they smoke more cigarettes and they eat unhealthier food. In fact 42% of men die prematurely (before the age of 75).[3]

But whilst these facts may be true for some it is certainly not true for all men. For example we are seeing dramatic declines in numbers of men smoking and, despite efforts to encourage women to don jogging bottoms and get active, men still generally do more exercise.2

Another important factor could be late presentation. Men are more likely to be treated in hospital as an inpatient for cancer and reasons include a lack of recognition and awareness of cancer signs and symptoms. In a recent interview for Third Sector, Owen Sharp CEO of Prostate Cancer UK, makes the point that ‘Men’s health inequality is just a big, big issue. There’s no biological or social reason now for us to sit here and say it’s all right that men die seven or eight years earlier than women do. We all just kind of accept that as the way it is. But it’s so often about late diagnosis and not having early interventions.’ [4]

And the issues don’t stop at the prevention and early diagnosis stage. Across all cancer types and all stages of the cancer journey men are less likely to report unmet needs than women with the exception of sexual health needs. Is this because they have fewer needs or do these needs just go unreported? How does a health and social care system know where to direct services if they don’t know what needs are unmet?

What if men are already at a disadvantage when it comes to accessing health and social care? Does it concern us that some studies have shown that men perceive subconscious (and unfortunately sometimes conscious) discrimination within healthcare settings, especially GP surgeries? ) [5],[6] The historic stereotype of the macho male is so engrained in us that it’s hard to unpick the myth from reality. The truth is men do care about their health; they just need approaching in the right way, at the right time.

Our evidence review has found that there are three main areas of need among men with cancer. These are in relation to sexual health, social isolation and financial support. Financial support services are generally well established and well used by men but this is not the case for sexual health or social isolation.

Men are not a homogenous group, their needs, attitudes and behaviours are as diverse as they are. Engaging men in positive health behaviours is possible and is being done successfully in small pockets across the UK. Take ‘Men’s Sheds’[7] and ‘Man MOT[8] for example, which have started to tackle some of the areas of unmet need amongst men.

Cancer does not discriminate – if we want to improve the lives of people affected by cancer EVERYONE needs to be included in cancer services and strategies. Let’s make sure services appeal to and cater to the needs of both men and women.

Societal culture is changing; let’s make sure we all change with it.

Rebecca Robertson is a Strategic Analyst in the Knowledge and Strategic Insight Team at Macmillan Cancer Support. This blog was based on an evidence review examining the needs and unmet needs of men with cancer and barriers which may prevent them accessing health and social care.

[1] White A, Thomson C and Forman D. The excess burden of cancer in men in the UK. London: National Cancer Intelligence Network; 2009.

[2]http://www.cancerresearchuk.org/prod_consump/groups/cr_common/@nre/@sta/documents/generalcontent/crukmig_1000ast-2748.pdf

[3] Men’s Health Forum. Engaging with men to improve their health. http://www.menshealthforum.org.uk/sites/default/files/pdf/mhf_vcs_toolkit.pdf (Accessed July 2014)

[4] http://www.thirdsector.co.uk/interview-owen-sharp-prostate-cancer-uk-importance-blokey/management/article/1329773

[5] Men’s Health Forum. Haringey Man MOT Project. A review of the literature: Men’s health –seeking behaviours. http://www.menshealthforum.org.uk/sites/default/files/pdf/mens_health_literature_review_dec2013_final.pdf (Accessed July 2014)

[6] Men’s Health Forum. Slow on the uptake? http://www.menshealthforum.org.uk/sites/default/files/pdf/mhf_bowel_cancer_project_report_2011_web.pdf. (Accessed July 2014)

[7] Men’s Sheds. http://menssheds.org.uk/ (Accessed December 2014)

[8] Man MOT http://www.menshealthforum.org.uk/Haringey (Accessed December 2014)

50 Days to May

By Gus Baldwin – Head of Public Affairs

In exactly 50 days time we get to vote for the next UK Government.

Various commentators have offered their opinions on the outcome including Andrew Rawnsley in The Observer last Sunday who thinks there will be no winner, only a ‘best loser’.

At Macmillan we don’t mind who wins or loses the General Election but we think it is crucial that the political outcome doesn’t negatively affect the lives of cancer patients across the UK.

geThat’s why we’ve been encouraging all political parties to support our three General Election calls. So that, whichever party wins, or whichever combination of parties win, people with cancer and their families and carers won’t lose out.

Prioritising cancer matters. It matters because between now and the General Election around 50,000 people will be told they have cancer*.

That’s more than just a statistic.  It’s the people we love, care and work with.

It’s 50,000 best mates, 50,000 neighbours, 50,000 mothers, fathers, sons, daughters, grandparents, brothers, sisters and colleagues.  These people matter, and the issues that are most important to them matter too.

Sadly too many of these people will have been diagnosed too late or will be shown a lack of compassion whilst going through treatment. And 12,000 will unfortunately die from the cancer**. Of those, around three quarters of them will have wanted to die at home but only a quarter will actually be able to do so.

What’s even more frustrating is that we also know that most of those who die in expensive hospital beds have no medical need to be there.  And the care they’ll receive isn’t even as good as the care they get at home.

The main reason people die in hospitals is because they get stuck in the system without access to the proper support they, and their families, need to be looked after at home.

As a result, around nine thousand families between now and 7 May will have to live with the guilt of knowing they couldn’t meet the dying wish of the person they loved. This simply isn’t fair.

At Macmillan we think it is high time the political parties made a choice.

We’re calling on party leaders to show they’re not happy for cancer survival rates to fall behind the rest of Europe, patients to be treated unfairly or to accept an end of life system which is failing families up and down the country.

Instead, we want them to support our three General Election calls:cross

  1. Cancer outcomes that match the best in Europe.
  1. For all cancer patients to be treated with the highest levels of dignity and respect.
  1. Free social care for people at the end of their life.

And we think it is time that everyone else made a choice too.

Instead of ducking behind the sofa when your local candidate rings your doorbell, ask them whether their party supports Macmillan’s calls, and then look out for the calls in their party’s manifesto.

You can also get more involved in Macmillan’s campaign here.

Over the next 49 days every community across the UK will be affected by cancer.  On day 50 it will be time for all of us to choose how we respond.

Gus Baldwin

Head of Public Affairs

Parliament@macmillan.org.uk – @MacmillanPA


*Macmillan Cancer Support. For full reference see www.macmillan.org.uk/Aboutus/News/Latest_News/Athousandpeopleadaydiagnosedwithcancerbyendof2016.aspx|
The 50,000 figure is based on the estimated number of new cases a day at 25 days into the 50-day period.

**Cancer Research UK. Cancer mortality projections for all cancers combined.
www.cancerresearchuk.org/cancer-info/cancerstats/mortality/mortality-projections|
(accessed January 2015)

A landmark for choice at the end of life

On Thursday the Department of Health published a seminal report on promoting choice in end of life care. Five years in the offing, the independent Choice Review Board was formed last July with the remit of making sure that adults at the end of life, their carers and family have more choice.

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Although it received little fanfare, due to the publication of the Savile Report on the same day, this report, entitled “What’s important to me. A Review of Choice in End of Life Care”, has done a great deal to advance the agenda for choice at the end of life.

Since 2010 numerous reports have pointed to the number of people who want to die at home (79%) compared to the low numbers that are actually able to (21%). These reports have also highlighted issues with bed blocking and unnecessary Accident & Emergency admissions, which put pressure on hospitals. The reports, including from the Nuffield Trust, Deloitte and Macmillan, all suggest that providing care in the community would be at least cost-neutral if not cost saving.

This report goes further and makes a number of specific recommendations, including placing a deadline of the year 2020 for the delivery of choice at the end of life. Other key recommendations include; the 24/7 provision of care, because people don’t only have issues during the hours of 9 and 5; the recording or people’s preferences and sharing those preferences with people delivering care, because professionals need to know people’s preferences in order to meet them; and free social care at the end of life, which is key to give people that little extra bit of support to allow them to die at home.

This report is incredibly timely, the current Government can still act to put in place some of the recommendations to make choice a reality. But with political party manifestos in the final stages of development ahead of the upcoming General Election, this report can also be incredibly influential on the offers that we see from each of the parties on end of life care.

Regardless of who forms the next Government, it is imperative that end of life care is prioritised. Currently around 480,000 people die each year, but this is expected to increase to 550,000 by 2035. The end of our lives is a time we will all face and we need to work to ensure that it is as comfortable and easy as possible now, not only for those people we will lose in the next Parliament but for generations to come.