Missing links: cancer rehabilitation strategy overhauled in England

Find out what recent changes to England’s cancer rehabilitation strategy mean for service providers. Louise Hunt reports on the demise of a national action team for cancer.


The disbanding of the National Cancer Action Team (NCAT) and the regional cancer networks in March 2013 have raised concerns that strategic leadership and guidance for specialists in cancer rehabilitation has been weakened.

Over the past six years one of NCAT’s major strands of work was to build the evidence base for cancer rehabilitation and support the strategic development of specialist services at a local level, marking the first time cancer rehab had a clear national focus for delivery.

This work was also instrumental in driving the case for allied health profession (AHP) lead posts on the regional cancer networks, of which there were approximately 16 at the height of the rehab drive.

The combined efforts of the NCAT rehabilitation programme and AHP cancer network leads were pivotal in getting rehab into cancer care pathways and, more recently, established as a key part of the ongoing national cancer survivorship agenda.

But now oncology physiotherapists fear that these losses could stall momentum in cancer rehab. Last year’s Macmillan Cancer Support report Cured - but at what cost? highlighted the extent to which people are suffering from the long-term physical and psychological consequences of cancer and its treatment. And demand for cancer rehab will only increase as the charity estimates the number of cancer survivors will rise from 2 to 4 million by 2030.

‘This is a really challenging time for cancer rehab,’ says Karen Robb, who until this summer was a consultant physiotherapist for cancer services at Barts and the London NHS Trust. ‘One of the immediate impacts is the loss of strategic leadership from NCAT and professional leadership and guidance from the AHP leads, who were a guiding light for therapists working in oncology.

‘They were important because they were the voice of cancer rehab and represented AHPs at meetings with other health professions and were continually raising the profile of cancer rehab to keep it on the agenda.’

As Macmillan’s new cancer rehabilitation strategy development manager, Dr Robb hopes to continue to influence this agenda at national policy level and would welcome input from other therapists in the field.

Cancer rehab ‘champions’ in short supply

Kate Jones, acting chair of the Association of Chartered Physiotherapists in Oncology and Palliative Care (ACPOPC), says members have also expressed concern. ‘The main impact on the ground is that there is a lack of uniformity of care. It is more difficult now to ensure equity of service provision.

‘Without the networks and AHP leads there is more work for individuals to do to establish what is happening elsewhere and areas of expertise.

‘This is a vital time. There is so much that cancer rehab can offer and it’s such a shame that it is not being championed in the same way.’

Kathy Pantelides, therapy manager at The Christie Hospital, Manchester, and former AHP lead for the Cheshire and Merseyside Cancer Network, agrees: ‘I think people are feeling cut adrift from national policy with the loss of NCAT and because of that there is a loss of strategic direction locally.

‘Although therapists will work hard to make service improvements, without NCAT there is a loss of a national driving force for measuring quality and setting standards of care.’

Ms Pantelides says there may have been less impact on cancer rehab services at specialist centres such as The Christie.

Her own workforce research has shown there is a trend in specialist cancer rehab physio posts being replaced by more generic rehab practitioners.

She suggests that the impact could be felt by specialists working in district general hospitals. ‘Our numbers haven’t been affected but physios in district general hospitals who might see cancer patients as part of a generic workload may be worse affected.’

Generic approach could provide answer

Her advice to physios working in cancer rehab is to source as many specialist materials as possible. ‘You will need to be proactive with self-directed learning,’ she says.

The key resources from NCAT’s cancer rehab programme are available on the NHS Improving Quality website, which links to NCAT’s work stored on the government’s National Archives website: http://webarchive.nationalarchives.gov.uk/20130513211237/http:/www.ncat.nhs.uk/ This includes a 2012 review of evidence, and Cancer rehabilitation: making excellent care possible, its last major study published in March 2013, which explains the importance of including rehab in cancer care pathways.

Jackie Turnpenney, former NCAT rehabilitation and survivorship lead, says that before the programme closed it was looking at how best to use the body of evidence for cancer rehab to influence commissioners and service providers.

She hopes these resources will enable therapists to take these messages forward, especially to clinical commissioning groups (CCGs) and health and wellbeing boards.

It may be, however, that in future the national focus will steer away from specialist rehab to a more generic provision for people with long-term conditions.

Ms Turnpenney, who is now based at NHS Improving Quality, reveals that she is currently working on an NHS England-commissioned review of rehabilitation services that will inform a top level survey of rehab services in the coming months. The intention is to do this through questionnaires sent to CCGs and this is now being piloted in one area.

Wider understanding needed

This will be a major study of importance to all NHS physiotherapists, Ms Turnpenny suggests. ‘This is a top level survey to gauge what is out there in terms of rehab provision and later we will start looking at quantitative data to assess the effectiveness of different models,’ she says.

Asked how this might impact on specialist cancer rehab services, she responds: ‘We do still need specialists who understand cancer, but I can see a time when, as patients move further away from the acute stage, they could receive more general rehab, which could be applied across long-term condition patient groups.

‘There will be an increasing need for general rehab practitioners to understand cancer and it will be important for specialist physios to link with district general and community physios to transfer their knowledge and expertise.

‘What’s missing now are the hubs to coordinate this work, but maybe clinicians on both sides need to take more responsibility to do this,’ she concludes. fl

Useful information:

National Cancer Survivorship Initiative: www.ncsi.org.uk To download copies of Cured – but at what cost?, visit: www.macmillan.org.uk and search for ‘cured cost’. To find out more about the Association of Chartered Physiotherapists in Oncology and Palliative Care (ACPOPC), visit: http://acpopc.csp.org.uk

Patients’ views on lung cancer care

NHS hospital trusts providing lung cancer services should produce action plans setting out the steps they will take to improve patients’ experiences.

That is of one the key recommendations in a report published last November by the UK Lung Cancer Coalition (UKLCC). Titled Putting patients first: Understanding what matters most to lung cancer patients and carers, the report says trusts should outline what measures they have taken to boost patients’ experiences in their annual quality accounts.

The report urges NHS England to ensure that indicators in national frameworks reflect what is important to patients with cancer and said the drive to improve care should continue.

Meanwhile, clinical commissioning groups (CCGs), and member GP practices, should link up with patient groups and local Healthwatch bodies in a bid to promote patient-centred care and direct resources towards the interventions that matter most to patients and carers.

Academic Health Science Networks should support CCGs to develop the workforce and equip health professionals with skills in communication and making shared decisions. Patients who currently have cancer could help design training programmes, as could those who are recovering, the report adds

The recommendations are based on findings from a survey conducted last summer among 432 patients and carers. Nearly half (46 per cent) of them said they had experienced delays in their care at some stage, while two in three (64 per cent) said they had been referred to hospital in a prompt fashion.

Richard Steyn, a consultant thoracic surgeon and UKLCC chair, said: ‘Despite 95 per cent of respondents citing “prompt referral to hospital” as a priority, our survey revealed that there are still too many patients facing unacceptable care delays. This is putting lives at risk.’

The report also uncovered a ‘general lack of support and information’ being given to patients and carers, as well as ‘mixed levels’ of public and professional awareness about the disease.

More than half of the respondents (57 per cent) said they had not received accurate information about their diagnosis, while four in 10 described their GP’s understanding of lung cancer as ‘variable’, ‘not enough’ or ‘not at all’.  

‘Despite, major improvements in lung cancer services in recent years, and many patients reporting a positive experience of care, these results are sobering,’ Mr Steyn added.

The UK Lung Cancer Coalition (UKLCC) is a coalition of the UK’s leading lung cancer experts, senior NHS professionals, charities and healthcare companies.

Established in November 2005, the organisation’s long-term vision is to double one-year lung cancer survival by 2015 and five-year survival by 2020.

For more information and to download a copy of the report, visit: www.uklcc.org.uk

Louise Hunt

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