Our response to the NHS Long Term Plan

The NHS launched its new ten-year plan this week (7 January 2019) following consultation with public, staff and service users about the improvements they’d like to see - you can read our recommendations here. Whilst blood cancer and lymphoma are not specifically mentioned, we’re glad to see a shift that suggests a more personalised, co-ordinated approach to cancer care in general. We want everyone affected by lymphoma to receive the best possible information, support, treatment and care and we welcome the steps the plan sets out to achieve this as follows.

Faster, accurate diagnosis

We called for faster, accurate diagnoses for people living with lymphoma so we’re pleased that the plan focuses on early detection. The plan reveals the roll-out of Rapid Diagnostic Centres: ‘one-stop shops’ where a person with symptoms potentially associated with cancer can have a series of tests. It also announces new testing centres specifically for cancer patients to ensure earlier diagnosis. A specialist focus on testing and diagnosis is particularly crucial for lymphoma which needs this expertise to ensure accurate diagnosis. The plan also introduces a new faster diagnosis standard from 2020 to ensure most patients receive a definitive diagnosis or ruling out of cancer within 28 days of referral from a GP or from screening.

We welcome these moves but they must be accompanied by more training for healthcare professionals. Having the right capacity and expertise at the rapid diagnosis centres will ensure fewer lymphoma diagnoses are missed. We know that people with lymphoma often visit their GP a number of times before they are referred due to the non-specific symptoms they may experience and due to the many different types of lymphoma they often have a prolonged route to diagnosis too. It’s crucial that GPs are supported to spot early signs of lymphoma so they can refer appropriately and promptly. Around a quarter of the extra £20 billion of funding will be allocated to GPs.  

Holistic support

Should a visit to a Rapid Diagnostic Centre or cancer testing centre result in a lymphoma diagnosis, patients need personalised, holistic support from the outset. Many types of lymphoma are treated with the aim of providing long-term control of the disease, rather than cure, and this can bring additional emotional and psychological challenges. Staff at these centres need to be able to offer or signpost the right support from diagnosis. So we’re really pleased that the plan commits to providing every patient with an individual care plan covering a needs’ assessment and access to information and ongoing support within the next three years. However, we called for greater joining up mental health services in relationship to cancer and do not think that the plan goes far enough to recognise this need.

Personalised treatment

We’re delighted that the plan commits to DNA testing for children with cancer. This will enable specialists to understand an individual’s specific condition better and prescribe the most effective treatment, personalised to the individual. The plan lists CAR T-cell therapy (licensed for certain types of leukaemia and lymphoma) as an example, although access to this treatment is extremely limited at present.

The plan also aims to extend the use of molecular diagnostics in adults and, over the next ten years, routinely offer genomic testing to all people with cancer for whom it would be of clinical benefit. This is welcome news for people with lymphoma, who may benefit from personalised therapies such as CAR T-cell therapy and targeted treatments licensed for specific genetic mutations in lymphoma.

However, NHS England’s commitment to improving personalised treatment must be matched by a commitment to fund these treatments.

Co-ordinated care and better integration of services

We also called for more co-ordinated care and better integration of services for people with cancer. So we’re pleased that the plan prioritises Integrated Care Systems (ICSs) that will bring together local organisations involved in delivering healthcare. This should include GPs, hospital clinicians and charities like Lymphoma Action. We believe that a key element of co-ordinating cancer care is ensuring that every patient has a clinical nurse specialist (CNS). We’re pleased that the plan commits to making this happen by 2022.

Improved access to clinical trials

Clinical trials are vital in the development of innovative treatments and play an important role in the treatment of lymphoma. We already contribute to this with our Lymphoma Trialslink service which brings together the relevant UK specific clinical trials which a lymphoma patient may benefit from. New drugs are transforming outcomes for people with lymphoma and we are pleased the plan commits to expanding participation in research and supporting increased access for children and young people to clinical trials. However, improvements in funding and access to new drugs beyond the clinical trials setting are necessary. We would like the rarity of some subtypes of lymphoma to be recognised in health technology assessments and greater consideration given to real-world data to provide better access to new treatments beyond clinical trials.

Next steps

We’ll continue to work closely with healthcare professionals to help them recognise the signs of lymphoma and understand the most effective ways to support someone right from diagnosis. Whilst we are pleased to see the commitments outlined for cancer care in the NHS plan, like many others we are concerned about the funding requirements; the pressures on stretched services; the timelines for some of these developments and importantly staffing issues which could impact on the ability to transform these commitments into reality for patients. However, the plan does take a whole cancer approach including rarer forms of cancer and this could be a real positive for people affected by lymphoma.

As the only charity dedicated to lymphoma in the UK we will continue to work with NHS England as the plan is implemented to be a voice for people affected by lymphoma so that they can be heard; influence decisions that affect them and raise awareness of lymphoma.

We are very glad to see a more personalised and co-ordinated approach to cancer care in the NHS Long Term Plan. We welcome the ambitions the plan sets out to achieve and urge the government to support the commitments with the resources and staffing needed to make these a reality for patients.

Ropinder Gill, Chief Executive, Lymphoma Action

9 January 2019