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Macmillan’s GP Advisers, with the support of GPs and the wider Macmillan team, produce a quarterly e-newsletter to inform GPs, primary care cancer leads and the wider primary care community.
It includes the latest developments, learning and case studies relating to cancer across primary care.
We would like to thank our amazing Macmillan GP Newsletter team for the continued enthusiasm and dedication that they bring to each edition, thank you Dr Bhushan Rao, Dr Lucy Martin and Dr Vicki Clarke.
Missed last quarter's edition? You can read it here.
This article is an opinion piece written by one GP. It does not necessarily reflect the views of Macmillan Cancer Support.
Is the GP the 'best placed’ professional to be a gatekeeper for access to social prescribing? Many colleagues are sceptical about the way General Practice is reported in the media, [where it] is seen as a potential ‘dumping ground’ for all manner of problems for patients, many of which do not appear to be medical, but related to social or financial problems, relationship issues or spiritual concerns. However, there is little doubt of the link between these issues and patients’ physical and mental health – with loneliness and social isolation, in particular, being independent risk factors for all-cause mortality.
The aim of the newly formed primary care networks is to ‘focus services around local communities and local GP practices to help rebuild and reconnect the primary healthcare team across the area they cover.’ Social prescribing being a key feature of the first wave of the Health Secretary Matt Hancock’s promised ‘new army of workers’. GPs, therefore are likely to have a pivotal role in employing and facilitating social prescribing services in the future.
Macmillan Cancer Support offers tips for GPs to understand how social prescribing relates to patients who are living with a cancer diagnosis, or with the long term effects of cancer and its treatment. The report, Hidden at home (PDF), highlights how a quarter of people living with cancer struggle with loneliness and its health consequences.
Social prescribers will be well placed to help with signposting to mental health services in the voluntary, community, faith and social enterprise sectors, [including] financial and benefits assistance, physical activity and support with returning to work after treatment. This could relieve demands on the increasingly stretched primary care services. Working collaboratively to develop new services within the PCNs should offer potential benefits for many of our cancer patients.
The five-year framework for GP contract reform in England emphasises the importance of multidisciplinary working to deliver personalised care to people within primary care. For the next five years, newly-formed Primary Care Networks will receive reimbursement funding for a social prescribing link worker to support patients across the network. This commitment will enable social prescribers to become an integral part of the core General Practice model across England, and is an essential way to ensure that people can access the support needed, as and where it suits them.
In response to the introduction of Social Prescribers in England and of similar navigator/link worker roles in Scotland, Wales and Northern Ireland, Macmillan has developed a suite of Social Prescribing Resources. These resources have been developed by Social Prescribers, Practice Nurses and GPs to provide social prescribing link workers with information, tools and resources to support them in their role. This enables them to support people living with cancer within primary and community care. These resources include:
We also collaborated with Myeloma UK to develop 10 top tips on myeloma.
You can view the full top tips series on our website.
A new report, Older people who died in hospital: England 2017 (PDF) has revealed that while 45.6% of people aged 75 and older died in hospital, the results varied by demographics and cause of death. Some key findings were:
The provision of insight into the characteristics of people dying in hospital can facilitate better planning of end of life care and advance care planning. However, the report acknowledges that while many people express a wish not to die in hospital, for some patients, the hospital is the correct place for care.
The NHS Long Term Plan prioritises new models of care to ensure that ‘patients get more options, better support, and properly joined-up care at the right time in the optimal care setting.’ The increasing use of digital technology, with digital consultations replacing some face to face encounters, is a key element of the plan.
An example of a highly successful model being used in Tameside is an on-call team of NHS doctors and nurses, using Skype to take video calls from care homes, wardens at sheltered accommodation and community teams.
The model offers advantages for both the individual and for the NHS. Older people receive quicker access to care, closer to home and unnecessary hospital visits are avoided; a reduction in avoidable ambulance call-outs and attendance at A&E and GP practices has been evidenced.
The system has prevented 3000 avoidable visits to A+E and freed up 2000 GP appointments, saving up to £1.3m. Hundreds of hours of NHS staff time has been freed up, to allow care for patients with urgent needs.
Other integrated programmes are being rolled out across the country with smart use of technology enabling quicker, more personal care delivered as efficiently as possible.
A recent international patient survey, conducted in over 10 countries (Jan-Nov 2018), asked almost 4000 cancer patients and carers for their perspectives on cancer care.
The majority of respondents reported their needs were sufficiently addressed. However, the survey highlighted 4 areas where improvements were needed:
Findings from this survey identify important areas where cancer patients have highlighted (from their personal experience) that improvements are needed. In the survey’s report, All.Can concludes: ‘Making these changes could lead to real differences – to patients’ outcomes, their experience of care and the financial impact cancer has on them, their families and ultimately on the health system and society as a whole.’
The themes identified in this survey align closely with previous findings from surveys by Macmillan Cancer Support and others; they have already been identified by Macmillan as priorities. Macmillan is working to address these unmet needs and the continued roll-out of personalised care and good quality cancer care reviews within primary care will support this.
Among the 3.23 million cancer patients studied, 38% died from cancer and 11% from cardiovascular diseases (CVD). Of the CVD deaths, 76% were due to heart disease.
The proportion of cancer survivors dying from CVD was highest in those with disease of the bladder, prostate and breast; endometrial cancer was associated with very high CVD mortality within the first year after diagnosis.
While CVD risk was highest within the first year after diagnosis, the increased risk of CVD mortality remained persistently elevated for all cancers. Increased CVD risk may be related to treatment (chemotherapy or radiotherapy); shared risk factors for CVD and some cancers (e.g. smoking, obesity) may also be relevant.
The study emphasised the importance of people living with cancer adopting healthy lifestyles, to reduce both their risk of cancer recurrence and their CVD risk. It also highlights the need for oncologists, cardiologists, and primary care to work together to minimise the risk of patients surviving cancer but succumbing to heart and circulatory diseases.
Functional rehabilitation service for complex post-cancer pain: A case study from the Complex Cancer Late Effects Rehabilitation Service (CCLERS).
As Primary Care Professionals, you are likely to be aware of several patients at your practice who are experiencing severe persistent pain and reduced physical function caused by late effects of cancer treatment. Our 2013 report Throwing Light on the Consequences of Cancer and its Treatment (PDF), estimates at least 200,000 people in the UK living with moderate to severe pain following their cancer treatment.
Complex cancer late effects patients are difficult to identify, as symptoms such as persistent pain can develop many years after cancer treatment and may appear unrelated to their previous treatment. Patients may have been discharged from cancer services and symptoms can present as new pathology. These are not necessarily always recognised as late effects, even after investigation. Some CCLERS patients have undergone cancer treatment over 25 years ago, and others are within 2-3 years of treatment. However, all are trying to make sense of their symptoms when there seems to be no obvious cause.
The Complex Cancer Late Effects Rehabilitation Service (CCLERS) is a national, specialist service for people experiencing persistent pain and reduced physical function due to the consequences of treatment for cancer. Armoogum et al (2019) found an interwoven relationship between the experience of cancer and persistent pain. The service aims to minimise the impact of these devastating late effects on people’s lives and to optimise their function and quality of life. CCLERS patients need to have seen local pain, rehabilitation or late effects services without improvement, and be considered complex by these services. Patients must also have finished their active treatment for cancer at least a year ago (excluding hormone therapy).
CCLERS is now based in the new RNHRD and Brownsword Therapy Centre, a purpose-built facility within the nearby Royal United Hospitals Bath NHS Foundation Trust site. The service is free for all patients registered with a GP in England.
Once referred into the service, patients are offered:
CCLERS includes the Breast Radiotherapy Injury Rehabilitation Service (BRIRS). BRIRS was established in 2012 through collaboration between Macmillan Cancer Support and The Radiotherapy Action Group Exposure (RAGE), a group of women who experienced terrible long-term side effects caused by radiotherapy for breast cancer. This patient-led group campaigned for many years for a specialist national centre, staffed by professionals, who understood their specific injuries and had the skills to help them manage their symptoms more effectively.
From the outset of BRIRS, referrals were also received for people with persistent pain post-cancer treatment but not specifically from radiotherapy treatment for breast cancer. To address this, in 2016-17, Macmillan funded a successful pilot for this wider group of patients. This resulted in an expansion of the service to include people experiencing pain and physical limitation from any cancer treatment at any site.
Bonnie (pseudonym), 47, was referred to CCLERS with chronic, severe pain in her lower back and left hip and weakness in her right hand. These were late effects following pelvic surgery, chemotherapy and radiotherapy for non-Hodgkin’s lymphoma in 1994. Bonnie’s pain had affected her quality of life. She struggled to sit, stand up or walk for prolonged periods. She was reliant on her family’s support with daily activities. She had lost confidence and had become socially isolated. She said that she ‘felt like an old lady.’
During the programme, Bonnie worked with therapists to improve her posture, balance and physical function using a neuro-cognitive approach. Bonnie identified core values with the clinical psychologist, which she translated into practical goals to support better social interaction. She described the programme as cathartic, enabling her to ‘release’ previously suppressed emotions regarding loss. She reported that she had a better understanding of how physical pain and emotional stress are linked, and this supported her progress with her rehabilitation goals. She attended groups on mindfulness, pacing, communication and relaxation.
By the end of the programme, Bonnie’s endurance had improved. She was able to sit, stand and walk in a more normal way for longer periods despite being in pain. She had identified ways in which she could improve her connection with others and had learnt some strategies to support her pain management. She commented: ‘I feel so much more confident and really proud of myself. I have found ‘me’ again.’
Since the service has been extended to include CCLERS patients, 39 people have attended the residential programme. CCLERS uses data from standardised self-reported outcome measures, undertaken pre and at 3 and 12 months-post the residential programme to evaluate its effectiveness. Measures include: the Brief Pain Inventory, which measures the severity and impact of pain on activity, the pain Acceptance and Action Questionnaire, the PHQ-9 (depression scale) and the GAD–7 (anxiety scale).
Results have shown improvements in patients’ perceptions of how pain impacts on their function and a reduction in depression severity and anxiety at 3 months and 12 months after the programme. See the table below for CCLERS outcomes (2018-19). Patients report that it is helpful to meet other people with similar experiences as themselves.
|Measures||Pre-programme median scores||Three-month post-median Scores||Twelve-month post-median Scores|
|Brief Pain Inventory (severity)||6.25||5.0||0.50|
|Brief Pain Inventory (interference)||6.14||3.4||0.71|
|Acceptance and Action Questionnaire||41||44||54|
|PHQ-9 – depression scale||10||3||2|
|GAD-7- anxiety scale||4||3||1.5|
Many CCLERS patients told us how difficult it was for them to find out about the service and be referred to it.
In late 2016, I was diagnosed with a Medulloblastoma (a cancerous brain tumour) at age 25. I was working as a bar manager in London and it was quite a shock.
I had surgery and radiotherapy and was then in remission. I wanted to get back to my old life, but I was not able to work in a bar anymore due to fatigue, partial deafness and movement issues. I was completely lost. This is when I found Shine Cancer Support. They are a registered charity that supports people in their 20s, 30s and 40s who have had a cancer diagnosis.
I went on their Great Escape event – a retreat for 22 young adults to access quality information, meet other people who have been affected by a cancer diagnosis at this age, and provide ongoing peer support to each other after the event. I would describe it as life-changing.
I started work later that year for a mental health charity, which I really enjoyed. I found I could relate to a lot of the struggles people had with their mental health after my own personal experiences. I began volunteering for Shine, which allowed me to give something back and to work with others who were in the position I’d found myself in.
I also really benefitted from a ‘Working after cancer’ workshop, which provided me with some practical information and support on what I could do next. I feel very lucky to be able to offer support to people who are experiencing similar issues. A big part of Shine’s ethos is that they ‘get it’ and all of our staff have had their own cancer diagnosis.
At Shine, we offer tailor-made support to young adults who have had a cancer diagnosis. We have 15 Networks around the UK that are run by volunteers who have had their own experience. Members of the group meet up for coffee, drinks and activities, which can play a huge part in tackling the loneliness felt after a cancer diagnosis. We also have two Great Escapes a year, a coaching programme that has supported 25 members this year, and Shine Camp – a camping weekend for cancer patients in our age range, their friends and families.
Our website has email addresses for all our local networks. Encouraging patients to visit our website, read the personal experiences, and get in touch with us is a great start (if you meet young people who you feel may benefit). There is a distinct lack of support for young adults who have had a cancer diagnosis. I would really encourage you to refer any patients to us, to ensure they are surrounded by people who ‘get it’ and can offer support.
To find out more, visit www.shinecancersupport.org.
Prehabilitation is the process of preparing people for treatment, including cancer treatments. It represents a shift away from a reactive model of managing the complications of treatments, and towards a proactive model of preparing people in advance.
Prehabilitation offers people with cancer three main benefits:
For many people, the diagnosis of cancer begins in primary care. Beginning the process of prehabilitation as early as possible allows additional time to prepare people for treatment. The work of the Primary Care Cancer Framework team in the Cardiff and Vale University Health Board shows the pivotal role GPs can have in crossing the traditional barriers between primary and secondary care.
In the interview below, Jenny shares her thoughts on prehabilitation with June, a Macmillan Allied Health Professional Advisor.
June: Hi Jenny, thank you for talking to us about prehabilitation and your experiences. Would you like to just say a little bit about yourself?
Jenny: I was diagnosed with breast cancer at the age of 48 and had double mastectomies. I also had radiotherapy and chemotherapy, so I went through all three treatments. I am now well and in remission.
June: Can you describe your experiences of prehabilitation?
Jenny: When I was diagnosed, prehabilitation didn’t really exist. I think elements of it were happening at the time. For example, my Macmillan nurse was a trained councillor. She was fantastic and supportive, particularly when the earth opened to swallow me when [I] got the news.
There were other bits and pieces that happened – for example, there was a group to prepare for chemotherapy which had women at different stages of the process. I met other people going through it and learned some tips and ideas from them [but] that wasn’t formal.
I went on a tour of the hospital where my chemo was going to happen. A volunteer showed me around. I don’t know who she was, or what her connection to cancer was, but I am eternally grateful because she gave me a tip. She said [to] make sure you keep exercising throughout your treatment, even if you just walk up and down the stairs or around the block if that’s all you can manage.
I took that advice on board and it kept me fit. It kept me sane and apart from the days I had my chemo, I doubt I had a day off work throughout the process. I was lucky, [I] was fortunate that I met her. If there had been a programme, something more structured to help people think that through and understand what might benefit them, then that would be brilliant.
June: Can you describe your view of what you think prehabilitation is?
Jenny: I think from a patient’s point of view, when you get a cancer diagnosis, things are going to change about your life whether you like it or not. It helps you take an active part, make some choices and to take some control of the journey that you are going to make, with experts on hand to advise you [and] hopefully some evidence based medicine behind it all. So, it means that you are actively taking a step to manage the diagnosis and treatment, rather than just floating on the waves of it and feeling out of control.
Read Imogen's blog about her experience as a Macmillan support line volunteer. She highlights the benefits of talking about cancer and looks at some of the different ways people can start talking.
If you've just joined the Community and aren't sure where to start, this is the group for you. Tell us what brings you here, and don't be afraid to ask questions. Someone will be on hand to welcome you and point you in the right direction.
Enhance your skills and knowledge through e-learning modules, face-to-face courses, events and toolkits.
Order or download free, reliable information for the people you support. Our booklets cover signs and symptoms, diagnosis, cancer types, treatments and living with cancer. There is also merchandise, signage and everyday essentials.
Four in five people are worse off financially because of their cancer diagnosis. Please tell your patients that we can help with guidance on financial planning, mortgages, accessing pensions and insurance and provide advice on benefits they may be entitled to.
This report contains findings from a Macmillan and nfpSynergy survey of primary care professionals in the UK conducted during May and June 2017.
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