This year, the NHS is expected to spend around £20bn on specialised services commissioned by NHS England, which is around 17% of the total NHS budget. The term 'specialised services' covers a wide variety of treatments, from proton beam therapy to forensic mental health services for young people. These services deliver leading edge care to patients and service users often with rare or complex conditions. Each service is faced with a different set of challenges and operates in vastly different contexts, yet too often 'specialised' services are thought of as a homogenous sector that requires a one-size-fits all approach.
The way specialised care is commissioned and delivered also varies considerably depending on the nature of the service, the patient population and the facilities available within a particular geography – there are a small number of specialist providers in England, tertiary centres that deliver specialist activity alongside more common services, and mental health providers undertaking specialist mental health activity, often within a networked model with a lead provider and additional responsibilities delegated from NHS England. Many specialised services are world class, drawing patients from across the globe, some operate on a national patient population and some operate in regional hubs.
As colleagues in NHS England reflect on their overall approach to specialised services and the contribution they make to delivering the long term plan, it seems timely to inform that debate with a range of perspectives. This series of eight interviews with trust leaders, policy experts and other key stakeholders explores some of the challenges and opportunities for specialised services across the country. From commissioning approaches, to improving outcomes, to embracing innovation, all of our contributors reflected a strong desire to deliver excellent outcomes, support pioneering treatments and deliver improvements for patients.
The relationship between specialised services and system working For some time, the NHS policy landscape has been dominated by the drive towards system working, first with the introduction of sustainability and transformation partnerships (STPs) and then integrated care systems (ICSs). Health and care organisations recognise the need to work more closely within their local areas and systems bringing together primary, secondary and social care services, and working more closely with clinical commissioning group (CCG) colleagues. However, for providers of specialised services, the landscape is more complex. The nature of the activity and the geographic spread of the patient population, means national policy makers, trusts and their partners are having to think differently about how to make specialised services work within the STP/ICS framework.
Patients often travel long distances to access specialised care. As Matthew Shaw, chief executive of Great Ormond Street Hospital NHS Foundation Trust, points out, only 4% of the trust's work actually originates from its local STP, but "now we're having to think around how to retro-fit specialist services into a new world of local systems". John Murray, director of the federation of specialist hospitals, believes there is a balance to be struck: "The NHS tends to be a victim of fashion. It goes from one extreme to the other – one minute it wants everything to be ultra-local, the next everybody wants to run the NHS by national diktat. If we're honest with ourselves, it needs to be more nuanced, and I hope it will be. But there have been occasions over the last few years when there’s been this very definite view that we've got to move to local population planning, and we know from experience that with many of the specialised services that isn't appropriate. So I would hope there can be a sensible discussion and balance struck."
We need a much stronger collaborative network between providers of specialised services and commissioners of specialised services.
Many define the success of system working on the basis of the maturity of local relationships, but as Mark Brandreth, chief executive of the Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, suggests, specialised services can often feel "too distant" and "too remote" to properly take part in these conversations.
To be clear, these providers aren't against the STP/ ICS agenda, the point is that they are having to think differently about what this means for their services. Mark Brandreth believes there is still work to do: "I'm a massive supporter of the ICS process. I think it's completely the right thing to do, but if the paradigm we're moving to is 'competition is dead and it’s all about collaboration', we need a much stronger collaborative network between providers of specialised services and commissioners of specialised services."
Making commissioning work
Commissioning arrangements often form the focus of a conversation to bring specialised services into system working. In recent years, specialised commissioning arrangements have felt transactional to many providers, but in the context of system working, many see an opportunity to change the landscape in order to make it work better for patients and service users. There are many considerations here, such as appropriate commissioning footprints, payment reform and governance arrangements, with varying approaches emerging across the country. Our previous Provider voices publication, Where next for commissioning? discussed developments to move commissioning more broadly to a strategic function.
Naturally, the role of the STP/ICS itself in taking on responsibilities for specialised commissioning has been discussed. Paula Head, chief executive at University Hospitals Southampton Foundation Trust (UHS), however, opposes the move towards delegating commissioning to ICSs because of the uneven distribution of specialist centres: "...delegating specialised commissioning to an ICS without a large specialist hospital will impact on those systems with a hospital like UHS within its catchment. The size of the system footprint won't be appropriate for certain services."
In other parts of the country, ICS planning boards are being set up to give local systems a greater say in commissioning decisions made by NHS England. Louise Patten, chief executive at Oxfordshire and Buckinghamshire CCGs, is optimistic about commissioning end to end services for populations this way, but accepts services will still need to be commissioned at scale: "The movement to try and get local CCGs involved in specialised commissioning is relatively immature but we have clear plans to set up our ICS specialised commissioning planning board. This isn't just about doing our bit of specialised commissioning for our population – specialised services have to be commissioned at scale. We don't want to lose the subject matter experts we currently have, but there is a need to develop the network of specialised commissioning. We should be further developing specialised commissioners to work alongside and in partnership with tertiary, secondary and primary care providers to really understand, technically and managerially, how best to commission that end to end service for populations."
This isn’t just about doing our bit of specialised commissioning for our population – specialised services have to be commissioned at scale.
For others, the new NHS England and Improvement regional structures are a more appropriate footprint to discuss specialised commissioning. Johanna Moss, director of strategy and business development at Moorfields Eye Hospital NHS Foundation Trust, believes a regional footprint gives her trust a greater voice across various STPs in which it delivers services: "The creation of the NHS England and Improvement London region offers a real opportunity for a clear commissioning voice for the capital that supports greater efficiency and reduces waste and duplication in the system... There is some great clinical collaboration at STP level, bringing together providers and commissioners: the added value the London region can bring for us is to provide a strategic framework for these collaborations and act as a real catalyst for widespread positive change."
In specialised mental health services, the story is different again. Many mental health provider collaboratives have seen considerable improvements in both quality and efficiency by commissioning specialised mental health services under lead provider arrangements. Dr Jason Fee, clinical director for the South West Provider Collaborative, is clear about the benefits this is bringing: "One of the benefits of this programme is that we were able to harness senior clinical leadership, bringing senior clinicians on board at the very beginning. I think it's the coming together of these senior clinicians and the senior operational managers to co-design solutions that has been one of the key enablers of our success... This has turned commissioning on its head and put clinical drivers at the forefront of service re-design rather than financial or other aspects."
Improving the patient experience
System structures and commissioning arrangements are of course only a means to an end. The real prize is improving the care delivered to patients and service users. Once again, there are a number of specific considerations because of the nature of specialised services. Often specialised services are at the forefront of the latest clinical developments, treating patients with rare and complex conditions.
Gemma Peters, chief executive at Bloodwise, explains some of the frustrations of blood cancer patients: "Because science in blood cancer is moving so quickly, the other challenge that we hear about a lot is that there's not one established treatment path... That can be overwhelming for cancer patients and they often feel that they have no agency in that decision-making process. Perhaps the most distressing point is end of life, where there seems to be a high occurrence of blood cancer patients not feeling like they were given all the information about the likelihood of treatments working."
Louise Patten expresses her own concerns about the patient experience: "The biggest frustration I experience are the letters of complaint, often from the patients themselves, who are trying to get hold of their next prescription or their next episode of local care. We don’t link up pathways very well for the person, either with their local district hospital or into primary care."
Similarly, Mark Brandreth thinks there is work to do to improve the link up with step down care once a patient has been discharged from a specialised service: "There are issues about what happens beyond discharge. My consultants get very anxious about the follow-up care that the patients they're seeing will get once they are back in their communities. The consequence is that we hang onto patients longer than we should need to, and we also bring patients back to a specialist centre when they could be supported with appropriate follow on, or step down care locally."
If these are some of the challenges, what are the solutions? Gemma Peters argues for a stronger patient voice in specialised services: "We have some examples of patients treated at organisations where they feel they have been really involved in discussions about their treatment, and also in the wider decisions of trusts about how they provide services. We work closely with NHS England to ensure that patients’ voices are represented. There are some really good examples, but it isn't universal."
Paula Head believes the key to unlocking better quality of care is staff engagement: "I think that there is a direct correlation between staff involvement in the trust and the quality of outcomes for patients... We make sure the environment allows them to have freedom to innovate, an opportunity to work with inspirational people in an organisation that cares about people – both patients and staff."
Investing in capacity to meet demand
There remains an ongoing challenge to keep up with demand for services. Like the rest of the NHS, within a constrained financial envelope and amid workforce challenges, providers of specialised services are struggling to create additional capacity. In specialised services, this issue is magnified by the growth of personalised medicine, where rare conditions often require treatment which is customised for individual patients.
This can mean that there is variation in terms of patient access across the country, as Gemma Peters explains: "There's huge variation in whether patients will be offered trials or offered the trials that are the most appropriate for their condition. That varies around the country and it’s an area of real concern for us." Matthew Shaw believes there are two stark choices: "The honest conversation we need at a national level is whether we are willing to pay more taxes and spend a higher percentage of GDP on healthcare to fund these new treatments for an increasing population. Or if not, what services we have to withdraw from."
The honest conversation we need at a national level is whether we are willing to pay more taxes and spend a higher percentage of GDP on healthcare to fund these new treatments for an increasing population.
For many trusts, it is the ongoing workforce crisis that means they are struggling to cope with demand. Mark Brandreth is concerned the ongoing pension issue is undermining the long term workforce strategy for specialised surgeons: "About 30% of our work is done on an out-of-job plan basis above what’s in our contracts of employment. The pensions issue has been totally devastating. Spinal surgeons are not ten-a-penny and to do the really complex work often involves two surgeons operating together over a ten-hour period. It’s not something where you can suddenly increase capacity. These are senior experienced consultants that we need to look after, and get them to train and develop others through the ranks. It takes a good surgeon seven to ten years to get up to this standard – you can’t fast track that. We've invested in some really good young spinal surgeons but I have to take a long-term view."
However, all of the specialised service providers we spoke to were solutions-focused in their approach. In the south west, Dr Jason Fee believes increasing community capacity for forensic services is one way to support patients and service users more effectively and appropriately: "One of our key strategic aims was to invest in community provision as an alternative to inpatient services, as we released efficiency savings by reducing the cost of the total inpatient cohort. A further benefit of community forensic services is that where they are co-located with an inpatient service, you divert service users at the very beginning because there's a community alternative. You also reduce their length of stay if they do need admission because there's a very clear care pathway set out from the beginning of the admission. This enables you to use your inpatient beds more efficiently, thereby enabling you to reduce practices of sending people out of area to access care."
Technology undoubtedly also has a role to play in tackling these challenges, as Matthew Shaw explains: "What we're seeing is an everexpanding ability to treat people effectively via new technologies, but some of those technologies are phenomenally expensive. If you look at CAR-T cells [genetically engineered T cells for use in immunotherapy], patients who would have had very high mortalities from recurrent cancers are now potentially curable with very expensive technologies where we alter and use cells to attack cancer within the body. We are only treating a few patients at the moment but the inclusion criteria will likely expand over time and it's a technology we think we can use in different areas."
Specialised services are a national asset that we should invest in in order to continue delivering world class and innovative services.
Research, innovation and technology
The opportunities to improve specialised provision with technological advancements are extensive. Delivering specialised services often requires strong operational and clinical links into research, innovation and technology communities. The work done at the front line of specialised service provision can be ground breaking and world class. It is an area that excites many and contributes to the NHS brand globally.
Johanna Moss is one of those excited by digital innovation work done at Moorfields and the opportunities this will present: "We've recently been awarded a Health Data Research UK bid, which is being led by the University of Birmingham, with partners including Google Deep Mind, patient organisations and other commercial organisations. It's a great example of where access to new funding sources are creating opportunities for us to explore and realise the potential of digital."
John Murray thinks there is a national opportunity to leverage innovation within specialised services: "We actually have national assets here in terms of healthcare delivery, but also in terms of the economic potential of the NHS. One of the really exciting things with the long term plan is to discuss how you can leverage the expertise of these national centres of excellence to diffuse innovation throughout the wider NHS. For that to happen, these centres need to be integrated with the wider NHS in a way which perhaps hasn’t always happened in the past."
But our participants are clear these opportunities depend on access to sufficient capital funding to invest in new technologies and innovations. Matthew Shaw wants a more honest conversation about how much it costs to invest in digital technologies: "[providers must not] fall at the first hurdle by failing to invest in the changes required".
Where next for specialised services?
Change is afoot across specialised services. In the world of system working, providers and commissioners are thinking differently about how they integrate specialised services into whole population pathways. These changes are happening organically based on the different relationships and services being considered. There will always remain a strong national component to specialised commissioning, particularly in the development of service specifications. And our contributors did not see any excuse for variation of outcomes or access across the country – indeed they saw it as a challenge to be overcome.
What's clear from these interviews is that there is a clear opportunity and desire to drive innovation and transform delivery. Specialised services are a national asset that we should invest in in order to continue delivering world class and innovative services. They provide fantastic opportunities for talented NHS staff to develop world renowned skills and break new ground in medical research. They offer a lifeline and irreplaceable support for individuals in need of treatment and care which they cannot access outside of the NHS. As Gemma Peters' puts it: "99% of patients would have no language to describe specialised care – it's just their health and their health care. [Although] the complexity of the system doesn't help patients to have agency... The ongoing commitment to new and innovative treatment is really exciting and positive: and... being able to provide [specialised services] is an important part of the NHS remaining loved and respected by the public."
Director of Policy and Strategy, NHS Providers
With thanks to Helen Crump, Director, Cogency Analysis & Research
for additional research and input