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We need to talk about data

This week we have a guest blog from Fran Woodard, Executive Director of Policy and Impact at Macmillan Cancer Support, and Sara Hiom, Director of Early Diagnosis and Cancer Intelligence at Cancer Research UK

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Every day more than 1,000 people in the UK are diagnosed with cancer. But how do we know this? And how do we know, at a national level, what treatment people have, what their chances of survival are, and whether this is getting better or worse?

The answer is simple. We know because we have high-quality data about the diagnosis and treatment of cancer.

Recent research shows that just one in three people feel they know either ‘a fair amount’ or ‘a great deal’ about how the NHS uses health data.

And, as we found out recently, the same is true for cancer data.

Cancer data in the UK is world-leading. Each of the four UK nations has a cancer registry, which the NHS and researchers use to plan cancer services and monitor how well they are diagnosing and treating patients. For example, the information is used to help plan how many radiotherapy machines to build and where they should go, and to investigate how many people are being diagnosed as an emergency, or what happens to people after their cancer treatment has ended.

The cancer registry allows the number of cases of each type of cancer to be tracked over time. This helps researchers investigate possible causes of cancer — such as whether there is a link between cancer and exposure to mobile phones or power lines.

Finally, the data can contribute to patients’ care, enabling clinical geneticists to check if a patient’s relatives also had cancer and adjust their treatment accordingly. And, if new information emerges about long-term effects of treatment, the cancer registry holds the data on who had this treatment. This means they can be contacted, so that they can get further support.

Research commissioned by Cancer Research UK and Macmillan Cancer Support shows that most people with cancer — around 9 in 10 of those surveyed — support the use of cancer data for ends like these. But they want to know what their data is being used for, who can access their information, how it is kept safe and secure and what details are kept. They also want to know about benefits and risks.

When someone is diagnosed with cancer they need to be told about this and the choices they have regarding their personal data. So what’s the best way to make sure this happens?

We heard from patients that health professionals caring for people with cancer are best placed to talk about the use of data and answer basic questions about it. As a simple first step, hospitals should ensure that existing patient information leaflets about cancer registration are available for staff to use and on prominent display to patients.

So that this doesn’t just rest on the shoulders of busy NHS staff, we’re looking into other ways to make sure patients are as informed and reassured as possible about what happens to the information about their cancer.

This data has been at the heart of progress in cancer in the UK. And we know that in order to reach our ambitious goals of improving care and survival, information like this is crucial.

The challenge now is making sure everyone knows about it.

 

What we’d like to see from the Cancer Strategy: one year on

It’s a big week for the All Party-Parliamentary Group on Cancer (APPGC). Ahead of today’s Britain Against Cancer conference and Thursday’s much-anticipated Backbench Business debate on cancer in Parliament, Ayesha Ahmed, Secretariat to the APPGC, reflects on the inquiry held by the group earlier this year into the progress of the 2015 Cancer Strategy in England.

Cancer services in England are at a crucial turning point. It is estimated that by 2030, 3.4 million people will be living with cancer in England and this figure continues to increase.  Transforming cancer services is no longer an option but a necessity, and is why implementation of the England Cancer Strategy is so important. This is an issue that Macmillan have been working on in our capacity as Secretariat to the All-Party Parliamentary Group on Cancer (APPGC), a position we have held for over seven years.

 

What is the APPGC?

The APPGC was founded in 1998 with the aim to keep cancer at the top of the parliamentary agenda, and to ensure that cancer policy remains evidence based and patient centred. The group consists of cross-party MPs and Peers, who monitor government initiatives, produce briefings for parliamentarians and campaign and debate on key issues in order to bring about improved cancer services for all those people affected by cancer.

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September’s inquiry report

In May this year, the APPGC held an inquiry looking into progress made since the publication of the report, Achieving World-Class Cancer Outcomes: A Strategy for England 2015-2020 (‘Cancer Strategy’) by the Independent Cancer Taskforce in July 2015, including a focus on the implementation plan published by NHS England in May 2016, Achieving World Class Outcomes: Taking the Strategy Forward (the Implementation Plan) which set out how the recommendations would be rolled out over the next five years.

The APPGC received written submissions from over 30 stakeholder organisations, from charities, pharmaceutical companies to Royal Colleges and patient representatives, and hosted oral evidence session to hear from key decision makers.

Having collated all the oral and written evidence, the APPGC published a report, Progress into the implementation of the England Cancer Strategy: one year on.

 

What needs to happen?

Whilst welcome progress has been made on delivering certain recommendations within the England Cancer Strategy since its publication, the APPGC’s inquiry highlighted concerns regarding the Implementation Plan and lack of visible progress made in other areas.

The APPGC therefore put forward three key recommendations to the Government and NHS England:

  • Firstly, the government needs to give further clarity over how it intends to fund the England Cancer Strategy each year, over the next four years.  Many contributors expressed their disappointment over the absence of detail on funding in the Implementation Plan, and sought specifics about how available funding would be used to deliver improvements across the entire cancer pathway.  Whilst some of this detail was set out in the Cancer Transformation Board’s one year on report, further clarity is still needed on how funding will be allocated to the six strategic areas outlined in the Strategy.
  • There needs to be further transparency regarding progress from NHS England and other Arms-length Bodies on how each of the recommendations as outlined in the England Cancer Strategy are being delivered. In addition, more detail is needed to explain how the Department of Health intend to hold these bodies to account and measure success of the delivery of the England Cancer Strategy by 2020.
  • Thirdly, the APPGC called on the National Cancer Transformation Board and the National Cancer Advisory Group to ensure greater involvement and collaboration with charities, other arms-length bodies and patients in the delivery of the England Cancer Strategy, locally and nationally.

 

What next?

The APPGC’s annual flagship event, Britain Against Cancer, is in its 18th year. As part of the conference today, we will be highlighting the Inquiry Report recommendations, calling on Government and NHS England to respond to the report and discussing how the cancer community can come together and work to ensure improved cancer outcomes. Follow the conference at #BritainAgainstCancer and Macmillan’s updates @MacmillanPA

The APPGC have also secured a Backbench Business debate on Thursday, titled Cancer Strategy: one year on, which also serves as a timely and welcome opportunity to discuss cancer services in the NHS today.  The debate will be a crucial opportunity for MPs to question the Minister on how the Strategy is progressing, and we look forward to monitoring the contributions on Thursday.

 

Carers Week – An Inspiring Week

Wow. What a great week!

Being new to the campaigning work that Macmillan does to support carers, there was no better way to get me inspired, fired up and ready to influence than this year’s Carers week.

As the most successful one yet, the annual campaign to raise awareness of caring saw 2290 individuals and organisations sign up, 1730 pledges of support and thousands of events taking place around the UK. This year’s focus was on building Carer Friendly communities that will support carers to look after their loved ones, whilst also recognising that they have individual needs of their own. Being supported by their local community is vital for those caring for a loved one with cancer, when a community is Carer Friendly every part of it will be geared towards addressing their needs.

Having never been one to do things by halves I thought that the best way to immerse myself in Macmillan’s work was to jump straight in, joining carers and charity colleagues for the Parliamentary launch of Carers Week last Monday. With 132 MPs from all parties attending the launch there was a buzz in the room as we celebrated the incredible work of carers throughout the UK. We were also able to discuss the issues that cancer carers face and to hear MPs talking at length to carers about their experiences, both positive and negative, and the daily challenges they face.

I was fortunate enough to sit with Victoria, a young adult carer who, after her dad was diagnosed with a brain tumour, cared for him with her step-mum for over a year. Not once did she consider herself as a carer, just a loving daughter.

Victoria’s story was incredibly moving and, as Carers Week drew to a close, I reflected on the stories I’d heard throughout the week. It really hit me that too many people go through caring alone and receive little help from the health or social care services. Carers who are not supported can reach crisis point, developing or worsening their own health and care needs.

Despite the overwhelming support that has been shown for Carers Week this year, reaching more people than ever, there is still much more to be done to ensure carers are getting the support they need.

After such an inspiring week I feel full of energy and ready to influence!

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