The Parliamentary Under-Secretary of State, Department of Health (Lord O'Shaughnessy) (Con)
My Lords, first, I thank the noble Baroness, Lady Gale, for securing a debate on this important issue. I am new to the brief but I know enough to know that she is a forceful campaigner on these issues and I very much respect her knowledge and opinion. Indeed, I thank all Peers who have spoken for their very informed and expert contributions. I will do my best in the time available to answer as many questions as possible. To answer the noble Baroness’s request, I would be extremely happy to meet her and others in order to discuss these issues following on from the debate.
As many noble Lords have said, neurological disorders can have a serious impact on people’s quality of life, cause disability and affect family members and carers. It is estimated that there are around 4.7 million neurological cases in England, with the UK prevalence of specific conditions including: 400,000 people with epilepsy; 100,000 people with multiple sclerosis; 5,000 people with motor neurone disease; 120,000 people with Parkinson’s disease; and 60,000 with neuromuscular disorders. It is probably fair to say that there is scarcely a family in England that has not been touched in some way by neurological illnesses and disorders. The NHS spends around £3.5 billion a year on neurological care—excluding stroke care, which is on top of that.
Since NHS England assumed its responsibilities as national commissioner and leader for the NHS in 2013, there have been a number of important initiatives aimed at improving neurological care, including the development of a national specialised service for neurological conditions to ensure that people with complex problems can access high-quality neurological care. The Government have established a national children’s epilepsy service that offers the chance of symptom improvement and even cure for children whose epilepsy cannot be well managed by routine treatment.
There is now a national augmentative and alternative communication service to provide support to patients with complex and progressive conditions such as motor neurone disease who cannot speak. The National Institute for Health and Care Excellence has provided a range of expert guidance to manage neurological conditions, including a motor neurone disease guideline in 2016 that was described by one of the leading charities as “hugely significant”. So, although I recognise the comments of noble Lords about what can still be done, good progress has been made.
The Public Accounts Committee report was mentioned in many speeches tonight. As noble Lords are aware, the committee published its progress report on neurological services on 26 February 2016. In their response on 28 April 2016, the Government agreed with three of the committee’s recommendations, around supporting CCGs with neurological commissioning, reporting back to the PAC on reductions in variation and providing greater clarity on who commissions what in the system. Less than a year on, we have been implementing those recommendations. Furthermore, progress has been made in a number of areas relevant to the PAC recommendations that were not accepted by the Government, as I will set out.
The noble Baronesses, Lady Finlay and Lady Walmsley, both talked about reducing variations in neurological care, as did other noble Lords. I think it is fair to say that this is not a problem that is unique to neurological services. Nevertheless, the Government recognise that there is work to be done.
We agreed with the PAC recommendations about reducing variation in neurological care in services and access to specialists. Reducing unwarranted variation is crucial to improving services and patient care, and to efficiencies. The overall programme to reduce variation across the NHS is delivered through the RightCare programme to all clinical commissioning groups. Of the 65 CCGs in wave 1 of the programme in 2016, 40% prioritised neurology because it offered a substantial opportunity to reduce variation in services and outcomes compared to other pathways. A similar proportion of the 144 CCGs in wave 2 are expected to prioritise neurology to the same degree in 2017.
RightCare is already delivering results. For example, the Southampton CCG discovered in 2014-15 that it had spent £1.5 million more on neurology emergency admissions than similar CCGs, particularly for headaches and epilepsy. In response, the CCG is providing education and support to GPs on managing headache and migraine patients and is working with local hospital consultants to develop a protocol for migraine management in A&E to provide quick access to diagnostics, avoiding emergency admission wherever possible. On epilepsy, the CCG is considering whether additional clinical expertise, such as specialist nurses, is needed in community services.
More information was clearly needed on the prevalence and outcomes of diseases, and that led to the creation of the Neurology Intelligence Network, which several noble Lords talked about. This sits within Public Health England, collates and interprets data on neurological conditions and works with the RightCare programme to develop neurology-related metrics that will offer further insights into neurological services and outcomes. The network will also run a best-practice and knowledge-sharing session for CCGs in March 2017, prioritising neurology. I can confirm that the Neurology Intelligence Network continues to be supported financially, and that local areas will continue to have their own neurology networks.
The issue of national clinical leadership has featured heavily in the debate. The Government did not agree with the PAC’s recommendation to retain the national clinical director for neurology. We recognise that NHS England’s decision to remove the post came as a disappointment to stakeholders. However, decisions about clinical priorities, including those regarding clinical advisory structures, are a matter for NHS England, as is consistent with the overall vision of service delivery that is clinically led. I am, however, more than ready to speak to NHS England about its general attitude to national clinical directors, and specifically on neurology.
The creation of the new neurology advisory group has been welcomed by noble Lords tonight. It brings together key system partners, professional bodies and stakeholders to align work to improve neurological care. This is the right point at which to express my gratitude to NGOs, charities and voluntary groups involved in supporting neurological care in the UK. The group is led by Professor Adrian Williams; it met first in October 2016 and is currently working with stakeholders and developing its plan.
The Government also disagreed with the PAC recommendations about how it held the NHS to account for delivering care plans. This was mainly because the objective no longer featured in the mandate and the previous metric used was unreliable. However, two important developments have recently taken place. First, in July 2016 NHS England announced a deal to grant 1.8 million people with long-term conditions access to the patient activation measure as part of its self-care support programme. This is a tool which captures the extent to which people feel engaged and confident in managing their care and helps professionals tailor support accordingly. It is an important part of ensuring that services are accountable to patients.
Secondly, and also in 2016, the final report of NHS England’s Realising the Value of Self-care programme was published. This provided a range of tools and resources, including an economic model to help the local NHS understand the costs and benefits of self-care approaches, such as peer support and health coaching. Evidence from the programme demonstrated that access to self-care can be effectively provided by systematically putting in place personalised care planning.
The noble Baroness, Lady Gale, asked about the clarity of commissioning responsibilities. This was an area where the Government were able to accept the PAC recommendation to better define responsibilities. The updated services manual was published in May 2016 and describes the responsibilities of NHS England and CCGs in terms of neurology outpatients. Specifically, it sets out that NHS England is responsible for only those services where the patient has been referred by a consultant to that service.
Going further, the neurosciences service specification, which sets out the design of specialised neurological care, is also being revised and NHS England is developing plans for consultation during the financial year 2017-18. I am keen to hear from noble Lords about any examples of patients falling into the gaps between CCGs and NHS England’s specialised commissioning, and I will ensure that when the new neurosciences service specification has been published there is a proper promotional plan to spread best practice throughout the healthcare system.
I will touch briefly on two further issues: personal health budgets and research. There is an extension of personal health budgets throughout NHS England at the moment, and anyone with a neurological condition who is eligible for NHS continuing healthcare has the right to a personal health budget. Beyond this, CCGs have flexibility around their introduction and are developing local plans which would include services used by people with neurological conditions, such as rehabilitation or wheelchair provision.
In the first six months of this financial year, almost 11,000 people had a personal health budget—an increase of 130% on the same period last year. By March 2021 between 50,000 and 100,000 people will benefit from a personal health budget.
Finally on research, there is clearly a need for more research, and spending on research through the National Institute for Health Research on neurological conditions has almost doubled since 2010.
I will now pick up a few points made by noble Lords in the debate, specifically ones I have not yet addressed. On the question of the workforce, in September 2016 there were 1,325 neurologists, compared to 1,019 in May 2010: that is an overall increase and includes 200 more consultants and 100 more doctors in training.
I very much take on board the point about distributional issues: whether areas of the country are not getting the right kind of support. I shall certainly look at that to find out what is happening and write to Peers. At this stage, I would not be too concerned about whether they are featuring properly in sustainability transformation plans—they are not attempting to be comprehensive about all conditions at this point—but it is important to watch them to ensure that neurological conditions get the attention that they deserve.
Several noble Lords mentioned waiting times. Clearly, we have referral targets, which should be met for neurological conditions, as with others. We are working with NHS England to ensure that that is done and that the staff are in place. Early diagnosis is also important, and NICE will be producing new guidance in January 2018 on that. I hope that that provides some reassurance to the noble Baroness, Lady Finlay.
The noble Baronesses, Lady Masham and Lady Walmsley, and the noble Lord, Lord Hunt, asked about the impact of Brexit on the workforce. Clearly, the health and care system is reliant on foreign workers. We will take that into account in negotiations and other opportunities, and are increasing domestic recruitment. I will not touch on the national stroke strategy here; that is for another time.
Finally, in response to the noble Baroness, Lady Masham, who praised me for my youth and energy, I say: long may that continue, and I will certainly do what I can to bring them to bear for the benefit of those patients who are suffering from these illnesses. I again thank the noble Baroness, Lady Gale, for tabling the debate, and all noble Lords for a useful, interesting and informative discussion.