Specialised commissioning costs the NHS billions each year. HSJ gathered experts to tackle some difficult questions, not least over the balance between central and local involvement. By Alison Moore

Getting specialised commissioning right is the key to helping improve outcomes for millions of people – including those with rarer diseases – and making the best use of spending on the NHS.

AbbVie

But such commissioning of specialised services, typically provided in few hospitals and accessed by comparatively small numbers of patients – for example, cystic fibrosis services or complex spinal surgery – is fraught with challenges.

Notable challenges include how to choose which treatments to fund, and how to devise a process which both involves clinicians and patients and delivers timely decisions. There is also a question of which organisations are best placed to make these decisions: should power be devolved to, or shared with, clinical commissioning groups or kept at the centre?

The roundtable and this article are sponsored by AbbVie. AbbVie took part in the roundtable and reviewed the contents of the article for factual accuracy but had no editorial input into its content

An HSJ roundtable, sponsored by AbbVie, looked at the difficult questions around specialised commissioning and what the government can do to get it right.
Dave West, HSJ’s senior bureau chief for commissioning and roundtable chair, said that the last couple of years had been a fairly “vexed time” for specialised commissioning.

Participants:

Dr Charles Alessi senior adviser, NHS Clinical Commissioners
Anita Charlesworth chief economist, Health Foundation
Saffron Cordery director of policy and strategy, NHS Providers
Alex Massey senior policy and campaigns adviser, The Neurological Alliance
Nick Meade director of policy, Genetic Alliance UK
John Murray director, Specialised Healthcare Alliance
Dominic Pivonka national market access manager, AbbVie
Mike Ringe NHS strategy and access manager, Association of the British Pharmaceutical Industry
Dave West senior bureau chief for commissioning, HSJ (roundtable chair)

Responsibility for it had been transferred to NHS England when it was formally set up in 2013. But at the time the national body, as well as being a new organisation, was also quite distant from those working on the ground.

NHS England had early ambitions around standardisation and reshaping the “controlling heights” of teaching hospitals, but this gave way to a realisation that there was not much effective commissioning going on and there was loss of control over budgets.

However, he suggested that the last year had seen signs of improvement and attempts to get to grips with the issues. New senior leadership had been put in place, spending had been closer to budget, and there was a clearer framework around access and service redesign.

At the end 2014, proposals for co-commissioning with CCGs for some treatment areas had been published but these had met with resistance. There were also concerns about public and patient involvement in the decision making process, and the decisions made by NHS England around whether or not to fund certain treatments.

“It is not always easy to see how NHS England nationally really sits alongside the National Institute for Health and Care Excellence role,” Mr West said. Then came this year’s revolt over proposed new tariffs for specialised services which had seen many providers reject NHS England’s proposals and emergency arrangements put in place.

After this very tricky start to NHS England’s role in specialised commissioning, he suggested the roundtable was “an opportunity to send a wish list” to the health secretary.

Lack of clarity

But what did the panel see as the key issues? Alex Massey, senior policy and campaigns adviser for the Neurological Alliance, said: “From the perspective of neurology there is a real lack of clarity in the division between specialist and non-specialist services.”

Neither side – the CCGs that were responsible for commissioning non-specialist services, and NHS England which was responsible for the specialist side – wanted to take responsibility for this, so this led to a situation where commissioning was not good. In some areas, CCGs were disengaged – in 13 district general hospitals there were no neurology services. This had led to a position where some people found it difficult to get access to neurological services.

‘The system needed to become more transparent’

There was a question around how CCGs could be better engaged with this – but also whether they had the knowledge and understanding to be effectively involved, he said.

The system needed to become more transparent, with appropriate involvement of patients, said Dominic Pivonka, national market access manager for AbbVie. He said transparency related not only to the final decision but also points along the way in the decision making process.

There was a need for clarity about at what point in the process stakeholders were involved. He suggested stakeholder engagement could be a lot more effective in the future and said it was important that clinical reference groups – which had both clinicians and patient representatives – were adequately resourced to meet their workload.

The complexity of things

Specialised commissioning was an enormously important and thorny issue for a number of reasons, said Saffron Cordery, director of policy and strategy for NHS Providers. The first was affordability: what did this mean against the demand for services going up?

“There is a whole issue around sustainability,” she said. “I think the more you dig into specialised commissioning, the more complex it becomes.”

To highlight this, she said some DGHs might offer a couple of specialisms but if they were taken away from that hospital it could struggle financially. There were also questions around whether removing these services would impact on access for patients.

“If you can manage in a small DGH to provide some specialist services, that is a benefit to people who live in a remote area,” she added.

‘The split in commissioning meant there was not an integrated approach’

But there were also issues around efficiency and quality of experience for patients. The split in commissioning functions between CCGs and NHS England meant there was not an integrated approach and patients risked ending up in the wrong service.

This was illustrated by mental health, where higher level services were commissioned by NHS England and others commissioned by CCGs. What did that mean not only for efficiency but for the experience of patients, Ms Cordery asked.

Mike Ringe, NHS strategy and access manager for the Association of the British Pharmaceutical Industry, called for clarity of processes and transparency of decision making criteria – on what basis were decisions made?

“We seem to have a good basis on which we could potentially build but we are not there yet,” he added. In the future the NHS would face challenges such as personalised medicine. “We need a system that can understand and recognise the future, and can embrace the future and not just ignore it.

Joint solutions

“From our perspective I think the solutions are joint. Affordability is a joint issue for all of us and we should be addressing that, not sticking our heads in the sand.”

Charles Alessi, senior adviser for NHS Clinical Commissioners, had a broader perspective. “Specialised commissioning is a symptom of a more serious underlying and unresolved issue,” he suggested. “It starts with where we invest.”

To illustrate this, Dr Alessi said that, 25 years ago, his local DGH had had just three paediatric consultants. Now there were 18. That could not be related to patients having more co-morbidities as children generally did not have them, nor could changing demographics be blamed. There had to be something else going on.

‘CCGs were concerned about becoming more involved in specialised commissioning’

He said: “The concept of specialised commissioning was a perfectly sound one: that it would be very difficult for local areas and local health and social care systems to take responsibility for very specialised care. The expertise would not be found there.”

But he pointed out there were sometimes different approaches. “CCGs are meant to be working around the person and working with local government and so on, but we have other parts of the system – specialised commissioning – which are biomedically focused. That is quite difficult to manage.”

In addition, a lot of new drugs were focused towards the latter part of life. Some fundamental decisions would have to be made about where to invest resources. “CCGs are in the middle of this and finding it quite difficult.”

CCGs were concerned about becoming more involved in specialised commissioning, in part because of the continuing resource issue, he said. “They would like to do this in terms of something that is resolved rather than taking a symptom and being blamed for it.”

Lack of data

Lack of data is a major issue in specialised commissioning, said Anita Charlesworth, chief economist for the Health Foundation. Ultimately this meant there was a lack of understanding about what was going on – was it that demand for these services had increased or that the budget was just “going wrong”?

“It is going to be difficult to get to a more coherent policy without addressing some of these data issues,” she said. “It is part of the reasons why the debate around this is so fractious.

“It is difficult to identify what is going on in data terms. If we have a new set of reforms without addressing data issues then we will have another set of fractious issues.”

But the longer term issues were different. The strength of the NHS had always been its population basis. “The intentions behind the specialised commissioning split were good and understandable,” Ms Charlesworth said.

‘It is difficult to identify what is going on in data terms’

“But we know that we need some sort of fundamental pathway redesign and both commissioners and providers can’t see their way through this.”

She said the system has also lost the ability to say whether areas were getting their fair share of resources. “In a system which has equity as a core goal, we need to think about addressing that,” she added.

Commitments to find the money for the NHS Five Year Forward View would not fund major improvements in quality but would simply “keep the show on the road”, Ms Charlesworth said. But the backdrop to this was that innovation would not stop and much of the innovation would be in the area of specialised services.

But, she added, CCGs were also seeing pressure on their budgets from elderly patients and also mental health.

“How will we deal with the very tough commissioning decisions that will have to be taken – bearing in mind there will be no money for major improvements? It will be a very tough commissioning landscape that will put enormous pressure on the balance between centre and CCGs.”

Patient voice

Nick Meade, director of policy for Genetic Alliance UK, which represents 180 patient organisations, said his organisation had looked at some of these issues, including the need for patient voice in the process. Clinical reference groups were meant to bring the patient voice into the discussion but in practice this had been patchy, poorly resourced and was losing faith among patients.

It was hard to rely on NHS England – for example, the website was rarely up to date.

Yet there was a backlog of medicines which needed to be assessed and more treatments were coming through: the current system was not streamlined enough and he did not think it would clear this backlog.

“NHS England don’t have a very good way to deal with a situation where there is no commissioning policy for a medicine,” he added. There is an urgent need for a process but it does not seem to be happening.

‘There is an urgent need for a process’

“We have to remember that there are people at the end of this programme who are not going to survive because decisions are being kicked down the road.”

John Murray, director of the Specialised Healthcare Alliance, said there was a risk in devolving commissioning that access to certain treatments would vary according to where patients lived.

He added: “Fewer than one in five CCGs fund IVF in line with clinical guidelines. Some don’t fund any at all.”

“Confidence will only grow as services are devolved successfully to CCGs,” he added. “If [primary care trusts] have never done it and NHS England can’t do it, what is to be done? If we are talking about a robust and timely process, NHS England’s process is not fit for purpose.”

His organisation had been asked for a process and had come up with one that could be completed within 23 weeks – speed was important when dealing with an annual prioritising round.

Mr West said: “We have heard some of the reasons for recreating population level budgets and that CCGs are wary of taking on a problem that is unresolvable – what would local commissioners need to take this on and give them the best possible chance to deal with it?”

Dr Alessi said that CCGs were very keen on co-commissioning as long as what they were dealing with had clear rules to manage it. “It is impossible to take anything on in a data free zone.

“How can one really take a population perspective? How is it possible if no one has any visibility on what is going on? It is foolish to accept unless one can see enough to make a judgement.”

He added that, in some cases, CCGs could not deal appropriately with low volumes of cases. “The ideal system would vary according to the condition and the number of people we are talking about,” he said.

Data was always necessary because without it there was no visibility of cost.

‘We need to start with a minimum data set’

Ms Cordery called for more benchmarking data. “What we have at the moment is anecdote rich and data poor. It is dangerous to make decisions by crowdsourcing anecdotes,” she said.

“We need to start with a minimum data set that we can base a decision on.”

Without it, it was not possible to understand value and economies of scale. “Until we get this right we can’t get the whole issue of accountability and transparency.”

Mr Meade added a caveat. With certain rare conditions it was difficult to generate the same level of data because the patient population was very low. There was work by Public Health England around establishing a register.

Mr Murray suggested that the data around highly specialised services used to be relatively good but this had declined when it was devolved to 10 teams.

However, it was difficult for any individual CCG to have leverage with the majority of providers around these issues. But he thought providers were up for supplying it.

“There is the opportunity to generate the kind of data that would support devolution of some of these services to CCGs,” he added.

Mr Pivonka pointed out the differences between some of the services that might be subject to collaborative commissioning between the centre and the CCGs.

“How are we going to decide which are appropriate to be taken forward?”

How would this be delivered at a local level and who would be involved, he asked. “Some specific patient input into these pathways would be welcome,” Mr Pivonka said.

Spending billions

Mr Ringe said there was a need for clarity around what was meant to be achieved and around service specification and ownership.

This could be challenging to providers. “The forward view says we won’t have all of these providers doing all of these things,” he pointed out. “At the moment no one can tell us what £14.5bn [the amount spent on specialised commissioning each year] buys.”

But he cautioned that it would take some time for any improvements in data to be put in place. “We have a number of issues that are coming together,” said Ms Charlesworth.

For example, she asked: “Where is the best place to have the expertise to commission?” This might depend on the type of condition, whether it was linked to other conditions and the extent to which long term conditions would require multiple pathways and services.

“Sometimes the outcome for the patient is dependent on the weakest link in the chain,” she said.

But then there were questions about who should make the decisions [on what to fund where] and what the role of NICE should be. However, NICE was not able to process enough decisions and there could be a postcode lottery.

“Wherever we end up, if we can’t get that NICE role clarified and make more clarity for patients about consistency, and we have evidence based commissioning standards, none of this will work.”

Dr Alessi said a misunderstanding around NICE’s role still existed. Technology assessments and guidance were seen as being the same. But technology assessments had to be implemented within three months under the NHS constitution.

‘Who should make the decisions on what to fund where?’

“We all have examples of technology assessments where the degree of penetration is interesting. There is cognitive dissonance between what one sees and what one expects to see.”

Mr West asked whether the panel felt that both the NICE and the NHS England process were needed.

Mr Murray said that it was difficult where the evidence base for rare diseases might be very small. This did not fit easily into the NICE process.

But NHS England’s system of clinical reference groups had been “woefully under-resourced and entirely dependent on the goodwill of those involved,” he added. However, they did at least get people together with patients and carers.

He said that NHS England had told some clinical reference groups that £100m of savings was needed in some areas but had then been unable to set a baseline budget.

And he warned there could be a haemorrhaging of clinical support to these groups. “CRGs are fundamentally a good thing. They need to be beefed up and properly resourced.”

There have been reports that NHS England might put pathway issues out to external advisers but it would be hard to sustain alongside clinical reference groups. “These advisers will struggle to give these decisions the sort of clinical expertise that CRGs have had.”

Ms Cordery suggested co-commissioning for mental health was fundamental – it was what used to happen but had been taken away. “Mental health provision lends itself to co-commissioning,” she said.

The support around those receiving care was particularly important and made it more effective. Co-commissioning might avoid the need for so many out of area placements.

“That is the area where we could see a step forward. I would like to see us continue to bring mental health into the discussions around co-commissioning.”

Where there were specialist services, they needed a lot of local support. There were issues around data and the monitoring of mental health spending.

Missed opportunity

She pointed out that the forward view had not contained a great deal about commissioning. “For me it is a massively missed opportunity,” Ms Cordery said.

“From a provider perspective we could see that as more power to our elbow. But we can’t take things forward without a sense of collaboration between commissioning and providing.

“If there was to be a son of the forward view it would focus on commissioning. It highlights the fact that it is a tricky nut to crack.

“It is right that the forward view was put together at the speed it was.” But at the same time, if it was the blueprint for the future, there was a need to give the system everything necessary to make it work.

Mr Murray said people were being asked to collaborate, but no one knew exactly what is meant by this. “Where is the money going to sit for the future? Are we talking about giving the money to CCGs, or sharing the money with CCGs?

‘Are we talking about giving the money to CCGs, or sharing it with them?’

“In which case we would have questions about accountability being blurred. Or are we really talking about commissioning together?”

Mr Massey added neurology was another area where people with complex conditions might benefit from a unified commissioning system.

But the question at the moment was whether CCGs had the capability and understanding that was needed. Sometimes, when they were asked about services, there was even confusion between neurology and mental health.

Mr West asked about affordability. The Treasury was going to take a renewed interest in NHS spending and potentially would also look at the social care budget, he said.

Ms Charlesworth said: “We come back again to accountability and transparency. I think if we are going to make some of these decisions in a way that can command support and be sustainable, it has to be done explicitly.

“People in the provider community, and patient community and wider public need to understand why. We saw this to some extent with the tariff.” Approaching it as a zero sum game would lead to the worst of all worlds, she said.

There was a need to be part of a system with a shared goal of improving care for patients, but there was also a need to get people to sign up to this, she continued.

“We have argued for some sort of transformation fund. If we take the example of mental health, most people would say they are locked into a pattern of spending.”
While people could see that changes to the system would bring benefits, they could not work out how to get those changes.

There was a need to identify some of the pathways where there would be a substantial gain from redesign, she added. It needed thought on how that can be funded.

The Manchester devolution was an interesting move in collective decision making which brought in local authorities. There was evidence that doing this with a population of over 5 million would bring benefits and accountability could also be closer.

Dr Alessi said when the forward view was looked at, some things were quite clear. Capitated budgets were likely in the future.

But there were questions about how that worked with rare conditions. “It brings into focus… that what we give to this we take away from that. It is going to be a very difficult place to be.

“We have to be careful that we don’t go down the path of demonising people but it also worries me that 95 per cent of money spent on kidney disease is on dialysis. It is going to be more transparent that what I give to you, I am not giving to someone else.”

Mr Meade said there were difficulties where there were effective but not affordable treatments, especially when there were examples of poor management and excessive use of agency staff in the NHS. “Does the public support disproportionate investment in conditions that are rare?” he questioned, saying this was an issue that had come up a lot recently.

Generally, however, there was evidence of public support for spending in this area over the last 10 years.

Ms Charlesworth said: “The NHS always has to choose how much it does.” However, people were not going to be prepared to engage substantially in decision making or talking around difficult choices until the NHS had done all it could around efficiency.

‘There ia a massive credibility gap’

But pathways could affect how much impact NHS spending had. However, there were difficulties when redesign might involve developing alternative services to those currently in place.

“People don’t trust the system to put the upfront funding in. There is a massive credibility gap there,” she said.

“We do need to show people that this delivers and they can be confident. We have NICE. Most other countries look to us with envy for a body like NICE.

Opaque decision making

“The public do accept that we can’t do everything and decisions have to be made,” she said. But they disliked opaqueness in decision making.

Ms Charlesworth was slightly worried about how NHS England was going into this area as there was a distinction between commissioning and what NICE did.
“But I think NICE can’t do all of this. The boundary between technology assessment and commissioning is a grey area.

“But if we want to take the public with us, people want this to be evidence based, accountable and separate from the day to day funding. I think therefore… we are more able to carry the public with us if we strengthen the role of NICE in the process.”

Mr Ringe pointed out there was a lot of evidence of slow implementation of decisions around treatment. Whatever process was agreed, there needed to be implementation at scale and at pace.

Medicines were the only area of spending subject to this level of scrutiny. Mr Murray said: “Good evidence is in part about developing the evidence base where it is inadequate for the likes of NICE to make a decision.

“There needs to be an ability to look at something, decide what evidence base is required to come to a long term decision, and then implement it.”

The ideal approach

Drawing the debate to a close, Mr West asked the participants what approach should be taken to specialised commissioning to make it better for patients.

There were a number of calls for a more transparent system which did more to engage patients. Mr Pivonka said one thing which was required was timely publication of minutes relating to decisions and greater clarity about where things were within the system.

A number of people also highlighted the lack of an appeals process in the current system. The need for relatively quick decisions and for those decisions to be implemented in a timely fashion was also mentioned.

‘There was a need for quick decision making and implementation’

Mr Massey said: “Bring in a process that can evaluate and bring in new treatments within a reasonable… time. It is a scandal the length of time it frequently takes.”
Dr Alessi also called for much swifter decision making and suggested that people’s jobs should go if it was not delivered.

Ms Charlesworth said there was a need to get the fundamentals right and have good data. “We risk having our credibility undermined if [the current situation] goes on too much longer,” she warned.

She suggested four or five areas where there were opportunities for efficiencies that could be identified and moved forward. Redesigned pathways could be tested and provide a basis on which to commission.