Reports now place more emphasis on cancer survivorship than ever before
This is a really important time for cancer rehabilitation and for allied health professionals (AHPs) working in cancer care,’ says Karen Robb, a consultant physiotherapist who is currently advising on commissioning cancer rehabilitation in London.
After a period of uncertainty about where cancer rehab was going, there are now strategic levers in health and social care that should drive forward transformational change in rehabilitation service delivery, and tangible improvements in patient care, believes Dr Robb.
Then the picture was pretty gloomy. It was felt that hard-won momentum in this field had stalled with the loss of AHP strategic leadership posts, following the disbandment in March 2013 of the National Cancer Action Team (NCAT) and the regional cancer networks.
But now ‘living beyond cancer has been given a really high profile’, says Dr Robb, highlighting NHS England’s Five Year Forward View and the publication last July of the Cancer Taskforce report’s strategy for England. A strategy for Scotland is due to be published later this year.
The report Achieving World Class Cancer Outcomes: a strategy for England 2015-2020, published by Cancer Research UK, places more emphasis on cancer survivorship than any previous cancer strategy and specifically references AHPs in relation to cancer rehabilitation.
AHP Lindsey Hughes, NHS England rehabilitation programme lead – her role was introduced in October 2014 to improve rehabilitation services – explains that the strategy sets out recommendations for the future of rehabilitation for people living with and beyond cancer, providing opportunities for rehab to become fully embedded in the care pathway.
The strategy stipulates that by 2020 every person with cancer should have access to a recovery package – a comprehensive plan that outlines treatment as well as post-treatment support and care. It also says a national quality of life metric should be developed by 2017 to ensure better support for people after treatment has ended.
‘Our challenge is to ensure that people living with and beyond cancer are able to access the right rehabilitation services at the right time, some of which will be specific to their diagnosis and some could be core rehabilitation services,’ says Ms Hughes, whose clinical background is orthoptics.
Oncology and palliative care specialist physios are encouraged by the rejuvenated focus. ‘The strategy provides a great opportunity for physiotherapists with the acknowledgement of the benefits of early access to AHP services and the importance of cancer rehabilitation,’ says Aileen McCartney, chair of the Association of Chartered Physiotherapists in Oncology and Palliative Care (ACPOPC).
However, there is still some way to go before cancer rehab provision across the UK is universally meeting the strategy’s vision. Dr Robb spoke out last year in articles published in the European Journal of Cancer Care and in the first issue of ACPOPC’s clinical journal, expressing her ‘deep frustration with the status quo’ in cancer rehab.
Having spent six months with Macmillan Cancer Support in 2015 analysing the state of cancer rehab in the UK, she concluded that there is a lack of leadership and understanding of what cancer rehabilitation is among commissioners and the wider NHS workforce. As a result, she feels services are not being planned, commissioned and delivered optimally.
‘I could see the bigger picture, that strategically it’s the right time to think about rehab services and planning for the future, but I could also see this was not happening on the ground and the frustration among clinicians who knew the benefits [of cancer rehab],’ she says.
In response to Dr Robb’s recommendations, Macmillan Cancer Support, which funds a large proportion of specialist AHP posts, has recently launched a cancer rehabilitation work programme and appointed dietician June Davies as its lead. She is looking at the direction of cancer rehab and what needs to be done to address inequity of provision.
The programme is examining the different service models in use. ‘We found rehab delivery is very different across the UK and we get a lot of requests for models of good practice,’ says Ms Davies.
She is also in the process of finding a new online home, possibly the NHS England cancer pages, for the original cancer rehab pathways for each tumour that have not been accessible to clinicians since the NCAT programme ended. ‘Since that time there has been a dearth of information and clinical teams haven’t been able to access the evidence-based models,’ she says.
Another important piece of work will be to later this year undertake a workforce review of the numbers and roles of AHPs in cancer rehab, which was one of the recommendations of the national cancer strategy. ‘The last census was in 2011 and was England only, the plan is to undertake a census of the whole of the UK that will be led by Macmillan, NHS England and Higher Education England,’ explains Ms Davies.
‘It will provide an up-to-date review of AHPs in cancer rehab because we know there are gaps in service provision and this will help with service planning.’
Ms Davies is optimistic that the national cancer strategy will help make the case for more specialist AHPs in cancer rehab. ‘It’s improving awareness of the contribution of AHPs in cancer provision. It’s raised awareness that the cancer journey is supported by a strong multidisciplinary workforce from diagnosis to palliative care,’ she adds.
But the challenge, as always, is communicating the benefits of these services to commissioners. Dr Robb suggests cancer rehab services need to do more to prove their worth. ‘There is a lack of sufficiently good data that shows the cost benefits of cancer rehab services, for example, how they are preventing hospital admissions and reducing length of hospital stays,’ she says.
However, there are pockets of services that are producing convincing data, she notes. For example, a lung cancer prehabilitation project in Sandwell, in the West Midlands, has proven that patients who begin rehab before surgery are recovering from their operations quicker.
‘They have shown that prehab is a cost benefit,’ she says. Research by Macmillan has also shown that lymphoedema services, of which there is a shortage, can save the NHS £100 in hospital admissions for every £1 spent.
‘We need guidance on how clinicians can prove their value to commissioners,’ says Dr Robb, whose job as rehabilitation clinical lead for the Transforming Cancer Services Team of South East Commissioning Unit makes her probably the only AHP in the UK producing commissioning guidance on rehab services from within such a unit.
‘We’ve still got some way to travel to ensure there is good dialogue between commissioners and specialist AHPs,’ she says. ‘Commissioners need to ensure they are creating opportunities for this dialogue and AHPs have a responsibility to ensure they are speaking to the right people, that they are informing and educating commissioners and they are collecting good data.’
Ms McCartney of ACPOPC agrees: ‘The importance of cancer rehabilitation has been acknowledged nationally and it is now our job to use that to highlight our priorities and improve access to and quality of physiotherapy for cancer patients at all stages of their illness. Physiotherapists must stand up and show what they can do for cancer patients as nobody will do it for us,’ she says.
Good practice in cancer rehab... what does it look like?
Cancer rehab is the term used for services delivered by specialist AHPs in oncology and palliative care, but it may be that a new definition is needed to more accurately reflect how AHPs are supporting patients throughout their cancer journey.
Macmillan Cancer Support is currently reviewing the definition of cancer rehab within the organisation and for its outward facing communications. ‘There is variable understanding among internal colleagues of what cancer rehab is, with many thinking it is only about physical function,’ explains June Davies.
Helen Tyler, Macmillan therapy services manager at Velindre Cancer Centre, Cardiff, agrees that there is a need to re-think the term. ‘Cancer rehab has a nice ring to it, but it creates the wrong impression.
It’s no longer only about rehab after treatment, it’s about supporting people to live with the impact of cancer, it’s about the adjustments people need to make from early on in their treatment and empowering patients to live well after treatment, whether that’s long term survival or end-of-life care,’ she says.
In acute cancer treatment, physios are involved in initiatives to help maximise rehabilitation potential, says Kate Jones, clinical specialist physiotherapist at the Royal Marsden Hospital NHS foundation trust.
‘For example, the physiotherapy department carries out prehabilitation for cancer patients prior to major surgery where it is possible to delay surgery to optimise fitness levels.
Recently, an audit carried out jointly between the upper gastrointestinal team and physiotherapy showed that the incremental shuttle walk test pre and post-chemotherapy predicted overall survival.
This demonstrates the importance of physical activity both during as well as after cancer treatment,’ she says.
In palliative care there is often a misunderstanding over why patients should have therapy, says Kim Barlow, specialist physiotherapist in palliative care at St Joseph’s Hospice, Hackney, London, who is a staunch advocate for patient access to therapy until end of life.
‘It’s a very exciting time to be a physio or AHP working for a hospice. Therapists have an integral leadership role in disseminating skill and confidence to aid other health care professionals to enable patients to participate in their personal goals alongside a deteriorating health trajectory.
‘People with a life-limiting illness want to remain as independent or participate in meaningful activity for as long as possible. Some people may live for months or years under a palliative care service. Those who are denied access to rehabilitative palliative care may have their life unnecessarily shortened by complications of reduced function due to care that’s not enabling.’
Achieving World Class Cancer Outcomes