Lack of support services for cancer survivors is a ticking time bomb

NHS must recognise the late effects of cancer.

Two million people – nearly double the previous estimate of 1.2 million – are now living with, and after, cancer according to new research released by Macmillan Cancer Support.

Macmillan initiated this research after growing concerned that official records of people living with cancer were not accurate and health services were only recognising the side effects of cancer, and not the long term effects.

The research confirms that many cancer survivors are falling under the radar. As cases of cancer continue to rise and deaths fall, the number of survivors will grow significantly over the coming decade. Local health and social care authorities must put in place the teams and services needed to meet the long term needs of those who have had cancer.

Macmillan is calling for a comprehensive package of care for each cancer survivor which reaches far beyond hospital care, providing emotional, financial and practical support for people living with cancer.

Ciaran Devane, chief executive at Macmillan Cancer Support says:

'The number of cancer survivors is growing every year and failure by Primary Care Trusts to put in place proper resources to care for these people is a ticking time bomb. It is about time the NHS acknowledged that cancer is no longer necessarily a death sentence and recognised its long term impact on people’s lives.'

According to a recent survey by Macmillan, people living with cancer find it far harder, or sometimes even impossible, to carry out simple daily activities like housework or going out to meet friends. Macmillan’s research also found they are more likely to need home visits from healthcare professionals. Their professional lives suffer too, with 30 per cent saying they cannot follow their preferred career after cancer.

Beth, from Surrey, was diagnosed with cervical cancer in 2005. Speaking about the impact cancer has had on her health she says:

'It was a shock. I’d never even had an abnormal smear test. I’ve found it hard coming to terms with losing my fertility, and losing the close care that you’re given when you’re going through treatment. I’ve learnt that ‘surviving cancer’ is all about living with the longer term emotional and physical effects of a cancer diagnosis. I’m still not sure whether I’ve ‘had’ cancer, or I ‘have’ cancer. When does it become the past tense?' 

Ciaran Devane continues:

'It is great news that more people are living after a cancer diagnosis but it must be recognised that care and support cannot stop when initial medical treatment ends. Survivors of cancer are often left with long term physical and emotional problems, fractured relationships or financial difficulties.'  

'Macmillan currently provides crucial help to around half of those affected by cancer. The NHS and Government must work with us to make sure the rest are reached too.' 

Jen, from Berkshire, was diagnosed with breast cancer in 2004. She was left with long term physical problems after her treatment for cancer. She says:

'I’ve had a mastectomy and chemotherapy, and I’m now going to be on medication for a few years. I’ve had bad reactions to some of the drugs such as panic attacks and burning sensations, and now I’ve developed hearing problems so I wear hearing aids.' 

To read the full research go to: http://www.thames-cancer-reg.org.uk/news/estcansur.htm

Notes to Editors: 

1. 'Prevalence' refers to the number of people who have had a diagnosis of cancer who are alive at any given time.
2. A 'cancer survivor' is defined in the Cancer Reform Strategy as 'someone who has completed initial treatment and has no apparent evidence of active disease, or is living with progressive disease and may be receiving treatment but is not in the terminal phase of illness, or someone who has had cancer in the past.'
3. Prevalence figures are currently increasing at a rate of 3.2% per year (based on the England prevalence data). This is likely to increase still further in the future with continued improvements in treatments and early detection and the population getting older.
4. Macmillan requested new figures for those living with and beyond cancer and Professor Henrik Moller and Jacob Maddams from the Thames Cancer Registry in King's College London in conjunction with The National Cancer Intelligence Network, led the work to compile the prevalence figures.
5. The UK-wide figure is derived by projecting the population figure for England to that for the UK. More accurate figures for Wales, Scotland and Northern Ireland will be produced from the data collected and held by their Cancer Registries. It will be released in the Autumn.
6. In England, Macmillan is working with the Government on the National Cancer Survivorship Initiative to look at the issues facing cancer survivors so when the medical treatment finishes, care and support doesn’t.
7. The figure coincides with the first meeting of the National Cancer Survivorship Initiative (NCSI), a crucial part of the Cancer Reform Strategy that aims to improve support services for cancer 'survivors'.
8. Cancer 'survivors' have varied and long term needs beyond the medical treatment they get. The issues Macmillan will be addressing through the NCSI in England are:
   • Better support following treatment – A comprehensive package of care for each individual reaching far beyond hospital care, providing emotional, financial and practical support for people living with cancer well into life after treatment.
   • Helping people to help themselves – Giving better information and support to enable people to make decisions about their own care, reducing their reliance on health and social care services.
   • Tackling financial hardship – Better access to information and specialist services about financial help is vital. A National Audit Office report found over three-quarters of cancer patients are not given financial support information at any point during their cancer treatment.
   • Getting people back to work – Improvements in policy and practice are needed to help people get back into employment as soon as they feel able. Macmillan calls for further development of NHS vocational rehabilitation.
   • Tackling the long term effects of treatment – Long term effects of cancer treatments may not occur until years after treatment but can have a debilitating impact. There needs to be a system for GPs to monitor long term effects better.
   • Better emotional and psychological support – Severe stress, depression, and anxiety are commonly experienced by up to 40 per cent of cancer patients. More effective long term emotional support is required to help people overcome the emotional scars created by cancer.
   • Ensuring that there is good research evidence – to support decisions made about how to invest resources for cancer survivors.
9. The examples given in the press release are from Macmillan's Health and Well Being Survey.
10. Macmillan Cancer Support improves the lives of people affected by cancer. We provide practical, medical, emotional and financial support and push for better cancer care. We will help anyone affected by cancer get the help and support they need. We fund nurses and other specialist health and social care professionals; we give emotional support; we offer financial help and advice, and we provide practical help at home. Since merging with Cancerbackup, the cancer information charity, in April we have broadened the range of information and help we can offer people affected by cancer. Visit www.macmillan.org.uk 

Please contact the Macmillan press office for more case studies or to set up interviews.

Macmillan Cancer Support press office, tel: 0207 840 7821. Out of hours: 07801 307068.

For media enquiries relating to Wales call Gwenllian Griffiths on 01656 867973 or 07793 579375.

For media enquiries relating to Scotland and Northern Ireland call 0131 260 3720.