Henny Braund discusses how patients can benefit more quickly from treatment advances when commissioners collaborate with charities
Blood cancer is the fifth most common cancer type in the UK and the third most common cause of cancer mortality, with more than 15,000 deaths each year.1 A stem cell transplant can represent the only hope of survival for people with the disease. By genetically matching patients with stem cell donors from the Anthony Nolan register or with one of the 33 million donors registered worldwide,2 each day the lives of three people in the UK are saved.3
However, with around half of stem cell recipients not reaching the milestone of 5-year survival,4 there is much more to be done to meet patient need. Effective cross-sector collaboration is the only strategy that will deliver success and the stem cell transplant community is taking important steps to unlock the power of partnerships.
The fundamental questions that we face in stem cell transplantation are, of course, being asked across specialised commissioning:
- how can we accelerate research to improve clinical outcomes?
- how can increasingly sophisticated forms of personalised medicine be accommodated?
- how do we ensure that the care and support that patients receive are built around their individual needs?
Effective cross-sector collaboration is the only strategy that will deliver success and the stem cell transplant community is taking important steps to unlock the power of partnerships.
These are big questions and they occupy the minds of charities and commissioners alike. However, as shared problems they have shared solutions; for this reason it is more important than ever that all involved in specialised healthcare work together in new and innovative ways.
A new research partnership
As one of the original forms of personalised medicine to be pioneered in the NHS 45 years ago, stem cell transplantation offers inspiration to anyone engaged in specialised commissioning. In the years that have passed since a young boy named Simon Bostic received the first successful unrelated donor transplant, over 16,000 patients in the UK have received stem cells from a donor.3
However, while more patients than ever are receiving a successful transplant,5 there remains a clear need for developments in clinical practice to deliver necessary improvements in survival and quality of life following treatment.
Such progress can only be delivered through robust research, but in recent years transplant centres have found it difficult to recruit sufficient numbers of stem cell transplant patients to clinical trials due to relatively small patient numbers and a lack of resource in individual centres. In addition, a complex regulatory environment has made it difficult for centres to work collaboratively. These factors have led to a worrying lack of high-quality research,6 representing a significant barrier to the adoption of improved treatment strategies as well as hindering effective commissioning.
In response, a unique collaboration has emerged; Anthony Nolan, NHS Blood and Transplant, and research charity Leuka have established IMPACT.7 The IMPACT Partnership brings together 22 specialist hospitals, networked around a single ‘facilitation hub’ at the Queen Elizabeth Hospital Birmingham, to accelerate the delivery of prospective clinical trials focused on improving transplantation outcomes.
In its first year the partnership has already delivered three multi-centre trials, currently recruiting patients with leukaemia and lymphoma, with more to come in the next 3 years. By serving as a ‘front door’ for stem cell transplantation research, IMPACT has also facilitated closer working with industry, further accelerating the progression of new technologies from the bench to the bedside.
By improving the effectiveness of clinical practice over time and reducing the likelihood of readmission and complications following transplant, it is hoped that IMPACT research will reduce the overall burden on the specialised commissioning budget. Collaborations like this promise to deliver significant value for the NHS and offer a model by which to ensure patients benefit more quickly from medical advances. But this benefit can only be delivered on a larger scale if commissioners recognise and embrace the power of partnerships with the charity sector.
A new era of personalised medicine
While efforts to evolve clinical practice in stem cell transplantation are ongoing and vital for many patients with blood cancers and blood disorders, new treatments are also opening up for this group. The possibilities that are being realised through genome sequencing and bioinformatics are exciting, allowing more targeted and effective interventions to be tailored for individual patients.
The era of personalised medicine is already here, but it is not new. Just as those early stem cell transplant pioneers pushed the boundaries of what could be achieved for patients with seemingly incurable conditions, so too are a new generation of researchers and clinicians in immunotherapy.
When the stem cell donor register was established in a small room at Westminster Hospital in 1974 it was a world first. The NHS achieved another first in 2018 by approving chimeric antigen receptor T-cell (CAR-T) therapy, which involves collecting and using patients’ own immune cells to treat blood cancers.8 The commitment by NHS England to ensuring access to this significant treatment is welcome. At the same time, however, novel therapies like CAR-T pose more challenges for a health service that is under pressure on numerous fronts. In this area, too, the third sector offers considerable value.
For example, the delivery of therapies like CAR-T requires rigorous processes for the timely collection, storage, and movement of cell products. Long-term follow-up data must be accurately captured and processed, and patients and families need appropriate care and support throughout their intensive treatment journey. These are all activities that Anthony Nolan engages in each day in its role as the stem cell transplant registry, and it is keen that its expertise is used by commissioners throughout the adoption of new and complex personalised treatments.
A pathway that works for patients
The provision of appropriate, long‑term, follow-up care and support is a new challenge in the context of CAR-T therapy, but it is a well‑established and persistent challenge in stem cell transplantation. Anthony Nolan has already sought to adopt a collaborative approach to identifying appropriate solutions.
Stem cell transplantation is an intensive treatment associated with a wide range of challenging physical and psychological late effects that require specialist follow up. As increasing numbers of patients receive a transplant and look towards their long-term recovery, it is vital that appropriate services can be accessed following treatment.
Unfortunately, research by Anthony Nolan shows that in this area the commissioning structure is working against patients. This is because transplant is commissioned as a specialised service until 100 days following treatment, after which time the funding and planning of services that patients need become the responsibility of local commissioners.
Why is this a problem? It could be argued that as long as the patient’s experience is unaffected it should not matter which commissioner is responsible for the service. However, the charity’s report Recovery after transplant: who cares? revealed that patients often face significant barriers to accessing the care and support they need following discharge from hospital.9 As one patient quoted in the report put it, the experience can feel ‘like falling off a cliff’.
The report also found that one‑third of CCGs did not realise they were responsible for services after the 100‑day time point,9 suggesting significant confusion in the NHS about who should be leading and coordinating long-term support for patients. The charity’s research also supports the findings of a comprehensive survey of late effects services in the UK NHS, which concluded that further work was required to solve variation in the long‑term follow up of transplant survivors.10 This clearly needs to be rectified, and from a specialist commissioner point of view, it makes no sense to invest in a treatment without ensuring that it has the best chances of success.
In response to this problem Anthony Nolan has adopted two approaches. First, it has funded post-transplant clinical nurse specialist posts in 12 hospitals, in addition to three specialist clinical psychologists. By partnering with hospital trusts in this way, these funded positions are not only helping to bridge the gaps in service provision, but they are also helping to develop best practice which can be disseminated nationally. Second, the charity has combined its expertise with that of clinicians, patients, and hospital leads to develop a post‑transplant pathway, which sets out clearly the services patients require at each point in their recovery journey and how these can most effectively be delivered. Following the completion of a consultation period in late 2018, the charity will publish its conclusions in spring. In doing so, it hopes to work in partnership with commissioners to ensure these important services can be accessed by patients for as long as they need them, regardless of where they live.
Patients as partners in decision-making
The project to develop a pathway for post-transplant care has shown that patients are keen to be involved in shaping the services they need. There is no doubt that patients and their family members can bring considerable insight and expertise to the table. Despite this, much more can be done to ensure that patients are regarded as partners by specialised commissioners.
This is a challenge that is particularly relevant in the context of the NHS England policy development process, which was examined in a report by the Specialised Healthcare Alliance (SHCA) in October 2018.11 The report highlighted concerns across the patient community that decisions are taken at NHS England meetings which are closed to the public, with no details shared following the deliberations.
As the SHCA pointed out, patients lack confidence in decisions when they do not know how they are made. The report concluded that NHS England can learn from best practice elsewhere when facilitating patient engagement, including from NICE and the Scottish Medicines Consortium.11
Addressing this challenge is also high on the agenda of the Blood Cancer Alliance, which is chaired by Anthony Nolan and comprises 12 UK charities representing people affected by blood cancer.12 Given that blood cancer is the fifth most common type of cancer in the UK and the third most fatal,1 it represents a significant area of focus for specialised commissioning. We are, however, falling behind other comparable nations when it comes to patient outcomes. The EUROCARE 5 study, which analysed data between 1997 and 2008, found that the risk of death across different types of blood cancer in the UK was higher than in other European regions.13
As well as serving as a forum to share information and ideas, members of the Blood Cancer Alliance are pursuing an ambitious shared agenda to ensure patients have a seat at the table when decisions are made about their treatment, care, and support.
The Alliance’s aim is to engage commissioners and policymakers to improve awareness of the specific challenges that blood cancer patients face, and to champion policy proposals which will help ensure that patient outcomes in the UK keep pace with other nations.
The activities of the stem cell transplant community illustrate that the third sector is a source of energy, enthusiasm, and expertise, and a constructive and valuable partner of specialised commissioners. Whether improving outcomes through research, sharing and developing expertise, or supporting patients and families, charities are proactively responding to challenges on behalf of their beneficiaries. Patient-focused organisations like Anthony Nolan deliver value to the NHS each day, but they could do even more if commissioners fully recognise and embrace this contribution.
How can we unlock the power of partnerships in specialised commissioning? Effective collaboration requires shared aims, regular dialogue, and transparent processes—all of which must be underpinned by mutual trust. Charities and commissioners alike must focus on strengthening these foundations if we are to tackle the big questions facing the health service in the months and years ahead.
- Bloodwise. Facts and information about blood cancer. bloodwise.org.uk/blood-cancer-facts (accessed 3 January 2019).
- World Marrow Donor Day. World marrow donor day. worldmarrowdonorday.org (accessed 3 January 2019).
- Anthony Nolan. Facts and stats. www.anthonynolan.org/facts-and-stats (accessed 3 January 2019).
- D’Souza A, Fretham C. Current uses and outcomes of hematopoietic cell transplantation (HCT): CIBMTR summary slides, 2017. Milwaukee and Minneapolis: Center for International Blood and Marrow Transplant Research, 2018. Available at: www.cibmtr.org/ReferenceCenter/SlidesReports/SummarySlides/pages/index.aspx
- British Society of Blood and Marrow Transplantation, 2018. www.bsbmt.org
- UK Stem Cell Strategy Oversight Committee. Unrelated donor stem cell transplantation in the UK. Effective affordable sustainable. Filton: NHS Blood and Transplant, 2014. Available at: docplayer.net/7404866-Unrelated-donor-stem-cell-transplantation-in-the-uk.html
- IMPACT. About IMPACT. www.impactpartnership.org.uk (accessed 3 January 2019).
- NHS England. NHS England strikes deal for ground breaking cancer treatment in a new European first. www.england.nhs.uk/2018/10/nhs-england-strikes-deal-for-ground-breaking-cancer-treatment-in-a-new-european-first (accessed 3 January 2019).
- Anthony Nolan. Recovery after transplant: who cares? London: Anthony Nolan, 2017. Available at: www.anthonynolan.org/sites/default/files/Recovery%20After%20Transplant%20-%20Who%20Cares.pdf
- Hamblin A, Greenfield D, Gilleece M et al. Provision of long-term monitoring and late effects services following adult allogeneic haematopoietic stem cell transplant: a survey of UK NHS-based programmes. Bone Marrow Transplantation 2017; 52 (6): 889–894.
- Specialised Healthcare Alliance. Achieving fairness for all: principles to help determine when and how to make treatments for rare conditions available. London: SHCA, 2018. Available at: www.shca.info/perch/resources/achieving-fairness-for-all-3.pdf
- Blood Cancer Alliance. About. www.bloodcanceralliance.org/about/ (accessed 3 January 2019).
- Sant M, Minicozzi P, Mounier M et al. Survival for haematological malignancies in Europe between 1997 and 2008 by region and age: results of EUROCARE-5, a population-based study. The Lancet Oncology 2014; 15 (9): 931–942.