Battling cancer: 'There is a whole world of support that is free to use – but it is up to patients to find it'
By Daloni Carlisle
I do enjoy looking through cancer strategies and the like. I realise it is a niche hobby but it's a laugh looking at what was supposed to have happened for me with holistic needs assessments, cancer care reviews and any other number of impenetrable abbreviations. And then comparing them to the reality.
I'm living with incurable cancer and I have been on the cancer treatment treadmill since 2014.
Don't get me wrong; I have a brilliant GP who always makes time for me. I have had nothing short of extraordinary clinical care from the various hospitals I've been treated at and the communication between secondary and primary care appears to function well.
But when it comes to addressing the wider needs thrown up by my cancer diagnosis, that's been left to me. Issues like work, talking to the kids, paying the mortgage, getting my sex life back on track after gruelling treatment for a gynaecological cancer, coping with the post-treatment depression, and dealing with the news that the cancer was back.
Part of me thinks I should go to my GP and ask for help with some of this. But it's mighty hard to admit to being depressed after successful treatment (even if it later fails) and even harder to ring a busy practice to talk about lubrication and loss of orgasm.
So then I think that surely a GP who's receiving letters from the hospital about the surgery, the chemo, the radiotherapy, the brachytherapy and the rest could guess that I'm likely to be struggling? And that it would be a good idea to reach out in a structured way to find out how I am, what my needs might be and how they could be met?
When I look at the strategies and now the NHS Delivery Plan, I can see that I'm not wrong. The cancer strategy for England1 has a whole chapter on the needs of people living with cancer and the side-effects of treatment, how they are not being met and what it wants commissioners to do.
One part of the answer is implementing the recovery package. This was developed jointly with Macmillan Cancer Support and offers a systematic way to assess and respond to the needs of people living with cancer. It's in the cancer strategy and its implementation plan is included in the Quality and Outcomes Framework – and should be in place everywhere in England by 2020.
Part of that package is signposting patients to the people and services that might help them with their non-clinical needs. To the cancer help centres where they can talk to others, get a massage or talk to benefits advisers. To the peer support networks run by a wide range of cancer charities that enable people to hook up with others in a similar position. Or to slimming clubs, exercise groups, gardening clubs, community choirs … there is an almost endless list.
The evidence is that most patients, like me, get no help to find that support. According to Macmillan Cancer Support, two-thirds of people living with cancer have ongoing support needs and 78% have emotional needs. Yet three-quarters say these are not being met.
The irony is that there is a whole world of support that is free to use – but it is up to patients to find it. And with 2.5 million people currently living with cancer, a figure that is projected to rise to 4 million by 2030, perhaps this is not good enough?
The costs of this failure are high – not just to individuals but also to the wider health system. Research by the Nuffield Trust in 2014, cited in Macmillan Cancer Relief's Top Tips for Commissioners, shows that 15 months after diagnosis, people with cancer had 50% more GP visits, 60% more A&E attendances and 97% more emergency admissions than expected.
Could some of these have been prevented by reaching out to individuals and signposting to services that address more than the biomedical needs?
The charity Breast Cancer Care certainly seems to think so. Its 2016 report4 on the care of women with secondary breast cancer highlighted how 16% of 840 respondents said they had not been signposted to any services provided by charities, and a quarter had not been told about palliative or end-of-life services.
The report notes: 'As treatments improve, people with secondary breast cancer will live longer. So it is vital that the right support is available both for the benefit of the patient and to mitigate additional strain on the NHS to care for people with secondary breast cancer for longer.'
David Crosby, director of services and engagement, outlines the kinds of free-to-use services his charity provides. In addition to information booklets and a nurse helpline, there are buddying schemes linking newbies and old hands, and there are 'moving forward' courses run jointly with the NHS that help women address the wider impact of their cancer on their lives.
The course is something everyone could benefit from, says Crosby, but last year it was available to just 1,900 of the 62,000 women diagnosed with breast cancer.
Recently Breast Cancer Care put together a resource pack with all the information people receive at a moving forward course and sent it to every practice. 'We want to be a resource for GPs,' says Mr Cosby.
I have no doubt that every single cancer charity would have the same response. If I were to ask councils about health and wellbeing services, no doubt I would find reams of information about health and wellbeing services such as exercise schemes, weight loss programmes and walking groups to which cancer patients would be welcome.
I also strongly suspect that every GP would throw their hands up in horror at the idea that they should marshal the various information resources for every cancer patient who presents. And quite right too. My GP didn't train for 600 years to tell me where the Citizens Advice Bureau is.
But there is a model that could help: social prescribing. One definition comes from the University of Westminster, which last year launched a social prescribing network that is supported by NHS England: 'Social prescribing enables healthcare professionals to refer patients to a link worker who supports them to improve their health and wellbeing by accessing a range of local, non-clinical services, often provided by the voluntary and community sectors. Therefore, social prescribing has been recognised as having the potential to reduce the financial burden on the NHS.'
So far, social prescribing schemes in the NHS have focused on areas of deprivation and on specific long-term conditions. More recently, cancer care has begun to get on board.
In 2015, Macmillan Cancer Support partnered the Bromley by Bow Centre in East London to deliver a two-year pilot programme offering social prescribing to people living with cancer.
Experienced professionals based in the community help those affected by cancer over the phone or in a series of one-to-one sessions. Together, they explore practical needs and personal goals, covering themes such as getting back to work, becoming more physically active, finding new ways to socialise or build self-confidence. Patients are signposted or referred to relevant local services and activities that can help them to achieve their goals.
Over 80% of patients referred so far have taken up the help offered and joined walking groups or received help applying for benefits, or whatever their needs happen to be.
Improving the journey
In its first year, the service received 280 referrals.
One woman said: 'I had never spoken to anyone to try and deal with my cancer. Everyone else I spoke to thought they were dealing with my cancer but they only helped with the medical side; giving me Prozac for depression, or chemo. I was part of the cancer machine. No-one was talking to me about how to deal with my cancer. That first meeting with the Macmillan Social Prescribing Service (MSPC) was really important.'
At the other end of the country, Improving the Cancer Journey is a collaboration between Glasgow City Council, secondary care providers and Macmillan Cancer Support offering personalised support to cancer patients. All patients diagnosed with cancer can go through a personalised needs assessment with a link worker who then signposts to relevant agencies.
It started in 2014 and hundreds of patients have been through the assessment and referral process and over 200 agencies have provided support. Users say it's given them back some control, reduced their stress and anxiety and helped them reduce their feelings of being isolated.
Sandra McDermott, who leads the service, says: 'We haven't introduced new services to meet people's needs once we have identified them – those community assets were already available in Glasgow. We've just managed to map out where that support is against people's needs. I think that has been quite revolutionary, because we're enabling more people to access support across the city in a much more efficient way.'
There is a deal of scepticism about social prescribing, with several reviews judging it ill evidenced and critics calling it a cost-cutting exercise. However, there is a growing body of evidence to support its effectiveness in improving quality of life for patients and, importantly, for clinicians too and possibly for reducing demand on the NHS.
There is also a growing body of resources for those who want to start.
In some ways, I am lucky. I know my way round the system and I know how to find the support I need. But I have been writing about the NHS and health services for the last 30 years so I really ought to be good at this. I know plenty of people who really struggle.
It seems to me that social prescribing is potentially a win-win for people like me, for clinicians and for the NHS. It is not going to solve all the ills of the NHS but it could really make a difference.
Daloni Carlisle is a freelance journalist