What cancer patients need

The 2013 Britain Against Cancer Conference (All-Party Parliamentary Group on Cancer (APPGC) Central Hall, Westminster 10th December http://www.appg-cancer.org.uk ) was organised around cancer priorities for the new NHS within 5 Domains.

Domain 1: ‘Preventing people from dying prematurely’ focuses on reducing mortality. According to Cancer Research UK and the King’s Fund’s ‘How to improve cancer survival: Explaining England’s relatively poor rates’ (2011) many people are still being diagnosed in advanced stages of cancer. The APPGC called for clarity on how Clinical Commissioning Groups (CCGs) will be held accountable when they fail to deliver improvements, and also for more to be done to promote the identification of symptoms by general practitioners.

The other Domains were:
Domain 2: Enhancing quality of life for people with long-term conditions.
Domain 3: Helping people to recover from episodes of ill health or injury.
Domain 4: Ensuring that people have a positive experience of care.
Domain 5: Treating and caring for people in a safe environment and protecting them from avoidable harm.

My experience of cancer care in 1990 prompted me to become a patient activist and campaigner for improved services. In nineteen ninety four I attended my first conference entitled ‘Patient Empowerment’ and, during a breakout session, had the opportunity to describe desperately needed changes, which included something to the effect that if only one change were possible – then addressing the issue of ‘GP too-late referrals’ would be the way to save most lives. During the plenary session, this was the only item of feedback to get spontaneous applause.

I ran a cancer support group and year on year had listened as patient after patient recounted how they had gone to their GP repeatedly with symptoms – often classic cancer symptoms – but had not been referred to a specialist – over a period of up to two years. Many only received a cancer diagnosis after being admitted via an Accident and Emergency Department, and had little chance of survival as a consequence. I wrote down my thoughts and, as a member of the local Community Health Council, was encouraged to circulate them as a paper to local statutory health bodies – hospitals, health authorities and others.

It was a good job I didn’t hold my breath in anticipation of any meaningful change. I began to write articles in medical journals and gave presentations at every opportunity in order to raise awareness of patients’ needs, but up until the year 2000, improvements to cancer services were piecemeal. Then came the NHS Plan and the NHS Cancer Plan and a little hope was reborn.

Remarkably, (for then I was ‘just a patient’) I was asked to contribute a chapter, ‘What Cancer Patients Need’ in ‘Modernising Cancer Services’ – Ed. Mark Baker (Radcliffe Publishing 2002). Having mentioned ‘the extensive shortfalls in cancer services’ recognised in the NHS Plans, I wrote ‘This chapter attempts to show why (such) reform is necessary and discusses the following: access and investigations; consent; treatment; pain relief and palliative care; allied humanitarian issues; communication and information; support; accommodation and environment; transport; postcode prescribing; ageism and other inequalities; and the role of patient organisations in promoting change and monitoring performance’.

However, it is now 2013. Year on year, I have attended conferences and heard the same issues raised by patients and the same rhetoric handed out by those in power. Even though the NHS Plans brought some long awaited improvements, the same issues continued to surface.

I am not a born cynic, but perhaps may be forgiven a wry smile when I compare my chapter with the above Domains, where most of them are mirrored. Perhaps 23 years as a patient activist has not been in vain and people with influence have read some of my writings (see below).

A wry smile perhaps, but this year’s APPGC conference has truly rekindled hope – for along with the same old issues there seemed to come a genuine commitment to drive forward the changes needed. Also, although ‘Patient Empowerment’ quickly became ‘Patient Partnership’, the unofficial ‘patient movement’ which it sparked had continued to grow and, with the implementation of the two NHS Plans, found a valid voice within official ‘user involvement’ as part of health care services. At the same time the growth of the internet has meant patients, patients’ representatives’ and activists could find and share information. They have become a force for change and are now able to join with health care professionals in this aim.

Nothing Personal, disturbing undercurrents in cancer care, 2008 – Mitzi Blennerhassett, Radcliffe Publishing Ltd
(winner Medical Journalists’ Association Open Book Award, 2009; ‘a landmark for the patient voice’ – Macmillan Cancer Support; essay prize given by RC Nursing, 2009). This is essential reading for all who deal with cancer patients – health professionals, politicians, health service developers, carers and, of course, patients themselves. It clearly gives us a distillation of what patients want – Professor Karol Sikora.
More information at: evenstarsexplode.wordpress.com

For the All Party Parliamentary Group on Cancer see http://www.appg-cancer.org.uk and find them on Twitter @appgc.
If you have a question for the group, you can contact the Secretariat via tnicholls@macmillan.org.uk

See also:

Cancer across the Domains – Cancer priorities for the new NHS. (APPGC 2013)
Towards the Emancipation of Patients – patients’ experiences and the patient movement – Charlotte Williamson, http://www.policypress.co.uk
Modernising Cancer Services, Ed M Baker, Radcliffe Publishing Ltd.

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About bmitzi

Medical writer, author, artist. Cancer campaigner. Aiming always to improve health services and bring compassion into health care.
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