Roundtable: Achieving consistent care in neurology

Hospitals across the UK are seeing growing numbers of patients with neurological conditions. These can range from acute presentations such as stroke through to chronic ongoing conditions such as multiple sclerosis and epilepsy.

This presents a challenge to the NHS. As well as initial treatment, these patients may need years, even a lifetime, of follow up care. Providing it all in tertiary centres may be impossible but if more patients are treated in district general hospitals or by their GPs, how can a consistent standard of care be guaranteed?

An HSJ roundtable, in association with Sanofi Genzyme, tried to explore some of these issues and ask what needs to change if this is to be achieved.

No one doubts the challenges neurology will face as a specialty over the next few years. Growing numbers of patients combined with the prospect of new treatments is increasing demand for services. How can this be met without quality being affected?

HSJ brought together a panel of experts to look at how neurology services can deliver consistent high quality care to patients, regardless of where they enter the system or where they are cared for.

Their discussions included some of the barriers to improving care as well as what can be done to improve. Multiple sclerosis was used as an example as it is already having to deal with some of these issues and experience in improving services for MS patients could provide a way forward for other conditions.

Lack of data

But is neurology a forgotten area compared to conditions like cancer, diabetes and heart disease? Chair of the event Professor Adrian Williams of the University Hospitals Birmingham Foundation Trust said neurology and neurosurgery were “quite a big ticket item” for the NHS with a £1bn a year spend.

Not all admissions are coded correctly and there is little coding of outpatients, which comprises a large part of neurology

Julie Riley, programme director for the neurology network at the Walton Centre FT, added that there were links into other priorities for the NHS: “It is really important that we link up with Sustainability and Transformation Partnerships and see how we can influence other workstreams within that.”

Many neurology patients receive treatment across primary, secondary and tertiary care, so offering joined up care is important. “If we can get it right in neurology, there is a lot of read across to other programmes,” pointed out Genevieve Edwards, director of external affairs at the MS Society.

But a starting point is understanding what is happening where at the moment – and the lack of data is a hindrance to that. Not all admissions are coded correctly and there is little coding of outpatients, which comprises a large part of neurology. “There’s a challenge in getting right back to the basics and getting coding right,” said Rachel Dorsey, a specialist pharmacist at Imperial College Healthcare Trust, adding that some of the coding for inpatients was “wildly inaccurate”.

Many round the table echoed this and said that coding for outpatients – a very large part of neurology – was rare.

Nor is hospital data always linked to GP data – making it hard to see what is the impact of hospital-based interventions on health utilisation in other areas. ”There are only pockets where they can be linked but it would be so valuable to have that,” said Sue Thomas, chief executive of Commissioning Excellence.

Commissioning framework

There was a general recognition that not all care can be provided in tertiary centres, even if that is where the specialist expertise lies. Much ongoing care will need to be closer to home, including with GP involvement. In the course of their disease, patients may move between clinical commissioning group commissioned services and services which fall under specialised commissioning and back to CCG commissioned ones again.

There was sometimes a lack of clarity about responsibility for funding and sometimes it was reliant on the goodwill of the CCG

But current commissioning mechanisms may not support moving more care, where appropriate, into primary care or less specialist environments. Martin Wilson, divisional clinical director for neurology, at the Walton Centre FT, said a “mature commissioning framework” was needed. One of the challenges was that specialist centres – such as the Walton – may lose out financially if work was done elsewhere, even though this may be the right thing to do for the wider health economy.

And who pays for what is often not clear. For example, monitoring of patients on medication is vital but some CCGs are reluctant to pay for this, seeing it as part of the specialist work. Ms Edwards said there was sometimes a lack of clarity about responsibility for funding and sometimes it was reliant on the goodwill of the CCG. There was a need to think more about how patients could move between different parts of the NHS without their care “falling down” in the transition, said Ms Dorsey.

Another issue is the willingness and capacity of primary care to take on more work. “There is a massive groundswell in primary care to push back work,” said Dr Wilson, adding: “We could do more to support GPs in the community. Even with good GPs there is probably a bit of anxiety around managing neurological conditions and getting it wrong.” He said more could be done with personalised care plans which could help community matrons and those in primary care.

But Professor Gavin Giovannoni of the Neurology Academy said there was a grey zone for MS patients over who was responsible for side effects of their condition such as constipation and urinary tract infections. Ms Thomas suggested this was a hidden problem which went deeper in that CCGs were often unaware of such issues and their costs. She had worked with CCGs who had not realised there was an issue around UTIs in neurology patients.

Going beyond traditional boundaries

However, some of the coming changes for the NHS may be helpful in working across traditional boundaries: accountable care organisations and systems could look more at overall cost rather than just what lies within one organisation. Ms Edwards said that there were a lot of opportunities around Sustainability and Transformation Partnerships – a point echoed by others who thought it was important to engage at the STP level.

Neurological conditions are not going to go away: and the prospect of new medications may add to demand for services

But showing that services are improving requires a consistent set of metrics – and agreement about what these should measure. Professor Giovannoni pointed out this was an area where NHS England could help in developing disease-specific metrics which could be reported centrally: “The current NICE metrics do not address the issue, there was not one single MS stakeholder who supported them when they came out,” he said.

In the North West, there had been an attempt to develop their own quality standards, said Dr Wilson. “Part of what we are trying to do through the network is set up a toolkit,” added Ms Riley.

This was taken on board by Jacquie Kemp, NHS England lead commissioner for neurology, who said this could happen first for MS with a small number of disease specific indicators but might then lead the way for other conditions.

Joe Wildy, Sanofi Genzyme public affairs and advocacy lead, asked about the timescale for change: some of the bodies involved were relatively new and a lag before the benefits of change were seen might need to be accepted. Ms Kemp felt there were prospects of some reasonably quick progress: “There are some pieces of work that we need to progress. We have great hope for the neurology GFRFT progress.”

In the long term many patients could do more to self manage their conditions and some neurological cases could be helped or avoided through lifestyle change: Professor Giovannoni described self management as “the real revolution” in MS.

“A person may have MS but they still want these activities of daily living like going out or going to the gym,” said Ms Riley. How could they be given the emotional and psychological support to give them hope of moving forward?

Patients may need better information about their condition to self-manage more effectively – including a detailed care plan – which would be different from a consultant’s letter, something which Ms Kemp felt could be worked on by NHS England. Ideally they could then refer themselves into services when they could not self manage or they experienced a deterioration or side effects. Ms Edwards said “activated patients, specialist services and confident GPs” could be a way of resolving many issues.

Handing back control of patients can help: Dr Wilson pointed to the success of patient-held maternity records. But he stressed that care plans had to be manageable for those healthcare professionals involved in preparing them and might require more than one template to cover the variety of patients presenting with MS and ensure they had one which was relevant to their personal position.

Neurological conditions are not going to go away: and the prospect of new medications may add to demand for services. Professor Giovannoni said he was already seeing people flood back into the system with progressive MS in the expectation that new medication may be available.

But while increased demand may challenge service provision, there was optimism around the table that neurology could rise to the challenge and ensure that all patients benefited from high quality care.

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