Improving rehabilitation services for Londoners affected by cancer - Transformation Partners in Health and Care

Dr Karen Robb, Macmillan Rehabilitation Clinical Lead for our Transforming Cancer Services Team, explains how we’re supporting commissioners to make sure Londoners affected by cancer can access high quality sustainable rehabilitation services

There are many different types of rehabilitation services that can help transform the lives of Londoners who are living with cancer, or who are recovering from it.

These can range from specialist speech and language therapy for patients who have undergone laryngectomy for head and neck cancer, to walking groups in cancer support centres.

Londoners affected by cancer may require rehabilitation services at different points in their lives and there are many ways they can support people. These include:

Helping patients recover from treatment and time spent in hospital
Supporting people to return to work, education and leisure activities
Improving the management of specific long term effects such as pain, fatigue or reduced mobility
Providing emotional support for patients and their families/carers
Improving Londoners’ quality of life and function and enabling them achieve their personal goals.

A wide range of cancer rehabilitation services are provided across London in hospitals and community care and by non NHS provider organisations.

It is likely that demand for these services will only grow as our population ages, and more people survive cancer and live with the consequences of their treatment.

As NHS England’s commissioning guidance for rehabilitation makes clear, there is growing evidence of the sound economic benefits of high quality rehabilitation services and the added value that these services provide.

However, our scoping report on cancer rehabilitation showed that there is an urgent need for comprehensive commissioning guidance for cancer rehabilitation in London as the commissioning of services are often fragmented and poorly co-ordinated. This can leave services vulnerable with a resulting impact on patient care.

We are now developing guidance for commissioners which will be accessible, easy to use and provide a clear picture of what good rehabilitation looks like, and how it should be commissioned. The demand for services will be informed by some recent prevalence data for London which reports on tumour type, age, ethnicity and gender across all CCGs in London. This work was produced by our team and will published shortly.

So that we can improve rehabilitation services for people affected by cancer across London, we need to help commissioners understand what services are currently available and how well they are working.

As described in our scoping report, ‘the lack of data on cancer rehabilitation services makes it difficult to demonstrate the impact and benefits of services, thus increasing the challenge for service development’.

We have now completed a detailed investigation of the data available on cancer rehabilitation services in London and collated the findings in a brief report: Cancer rehabilitation services – data recommendation report

Led by a Cancer Information Analyst and supported by a task and finish group, this work included an examination of existing databases and interviews with system leaders and clinicians.

We found that there is no existing database of cancer rehabilitation metrics that can support the needs of commissioners in London to help inform their decision making.

As a result we have designed a minimum dataset which will support the commissioning guidance for cancer rehabilitation services. This will be piloted in a number of London sites, and published with the commissioning guidance in 2018.

The minimum dataset for cancer rehabilitation includes:

Patient demographics
Information on the type of cancer and cancer treatments
Details about the provider of rehabilitation and reasons for referral
Details on the type and amount of rehabilitation received by the patient and discharge status.

This is clearly the first stage in a long collaborative process to develop a set of metrics that can show the impact of the full spectrum of cancer rehabilitation services, at both a patient and system level. The key thing to remember is that the current dataset is a minimal dataset, and much more work is needed.

Future versions of the database will need to take into account work led by NHS England to develop a national quality of life metric for cancer, and any emerging evidence on patient reported outcome measures.

I hope that our work will be embraced by clinicians, service users, commissioners and system leaders alike, as we continue to work with our partners to develop evidence based sustainable cancer rehabilitation services for London.

About the author

Karen is a specialist in cancer rehabilitation and trained as a physiotherapist in Scotland, graduating in 1992. Her career has spanned virtually all of the domains that contribute to improving the care of cancer patients and she has held clinical, academic, research and strategy posts. Karen is currently Macmillan Rehabilitation Lead for the Transforming Cancer Services Team in London, where she supports commissioners to make decisions about rehab services. In previous posts Karen has been Regional Lead for Rehabilitation for NHS England in London and Consultant Physiotherapist for Cancer services at Barts Hospital.