The next item on our agenda is the statement by the Cabinet Secretary for Health, Well-being and Sport on the neurological conditions delivery plan of 2017-2020. I call on the Cabinet Secretary for health, Vaughan Gething, to introduce the statement.

Thank you, Deputy Presiding Officer. On 27 July this year, I published the updated neurological conditions delivery plan. This plan reaffirms our continued commitment to ensuring those affected by neurological conditions have timely access to care when they need it and as close to their homes as possible.

The plan was first published in May 2014. It focuses on raising awareness of neurological conditions, ensuring quick diagnosis, providing fast and effective care, and working together across sectors to help people live with their condition. The plan also aims to improve the information available on neurological conditions and treatment, as well as help to target research into causes, treatments, and cures. The delivery plan sets out our expectations of all stakeholders and provides a framework for action by health boards, NHS trusts and partner organisations.

There are more than 100,000 people in Wales affected with a long term neurological condition. Conditions range from—without an exhaustive list—cerebral palsy, muscular dystrophy, Parkinson’s, through to multiple sclerosis and epilepsy and others. Numerous other people suffer from short-term or infrequent neurological conditions.

Good progress has been made since the original plan was published in 2014. In the last annual statement of progress, published this March, there was a reduction in the average time an individual spent in hospital, falling from 6.4 days in 2010-11 to 4.2 days in 2015-16. The length of stay following an elective admission has also reduced from 3.9 days to 2.2 days, and a similar reduction has been seen in emergency admissions, from 9.2 days to seven days.

Along with positive improvements in the treatment and care of neurological patients, we have seen a substantial increase in the number of patients recruited into neurological health and care research in Wales clinical studies: 511 patients took part in 2015-16, compared to 300 patients in 2010-11.

Neurological care represents the tenth biggest expenditure area for the NHS in Wales. Over the four years to 2015, this rose 65 per cent, up to £293.7 million. In terms of spend per head of population, that equates to £91.76 per person. The updated plan contains key actions, which build on the foundations of the previous plan and continue to drive forward the vision for improving services across Wales more effectively, at greater pace, and in conjunction with each health board’s local vision for their resident population. Actions include strongly encouraging health boards to talk and listen to their patients and stakeholders, and to strengthen their partnerships with local authorities and the third sector.

The plan reaffirms the Welsh Government’s resolve to ensure people receive a faster diagnosis wherever possible. Actions in the plan require health boards and networks to take steps to raise awareness of neurological conditions at a primary care level, and to provide the right access and support to specialist assessments and tests. The plan also recognises the valuable role played by the third sector, who’ve come together under one umbrella as the Wales Neurological Alliance. The alliance is seeking to raise awareness among healthcare professionals, using funding secured from the neurological conditions implementation group.

So, we are now in a place to move ahead with greater pace. The conditions implementation group provides national leadership and support to do so. That implementation group brings together all the health boards, the third sector, and the Welsh Government to work together collaboratively. That group has identified priorities for 2017-18, and these include developing a co-productive approach to increasing awareness of neurological conditions, delivering clear and consistent patient information, the consistent delivery of access to neurology services for patients of all ages throughout Wales, developing consistent and coherent neuro-rehabilitation services for patients of all ages, and developing and responding to both patient experience and outcome measures. These priorities continue to be supported by £1 million of funding each year. Together, the neurological conditions and the stroke implementation groups have continued to work together and combine their moneys for a joint project. For example, combined funding has been used to deliver a pan-Wales £1.2 million neurological rehabilitation improvement programme.

In 2016, the implementation groups worked in partnership to develop patient-related experience measures, or PREMs, and patient-related outcome measures, or PROMs, for both stroke and neurological conditions in Wales. This programme aims to gain an insight into services from a patient perspective and use their real-life experience to help improve our services. By March of next year, the aim is for Wales to have PREMs and PROMs that can be administered, collected, and collated on a national level. These should help both to identify inequalities in health and care provision across Wales, to support the evaluation of service development, and demonstrate change over time.

Patients are able to access the new treatment fund that I announced at the beginning of this year. We’ve built on the equitable system we have in place by ensuring the fund supports all new medicines that have been proven to have a good balance between cost and price charged to the NHS by the manufacturer. The fund underpins our evidence-based approach to the availability of new medicines, and supports faster access to the full range of new medicines coming through the appraisal pipeline.

Through Health and Care Research Wales, the Welsh Government has invested £1.2 million in the Brain Repair and Intracranial Neurotherapeutics Unit, or BRAIN Unit, set up in May 2015 and led by Cardiff University. This unit is seeking to deliver novel cell, drug, and growth factor therapies to patients with currently untreatable neurological and neurodegenerative diseases, such as multiple sclerosis.

We must make the most of our resources in Wales—not least the skill, dedication, and hard work of our clinical staff, service managers, and our third sector organisations. We want to create a more equal relationship between patient and healthcare professionals, enabling people to co-produce their treatment based on their values, goals, and circumstances.

Whilst there are clear areas where progress has been made, often through collaboration between NHS Wales, the third sector, and other partners, I will not, of course, fail to acknowledge that there is still work to be done. The updated neurological conditions delivery plan recognises this and contains a set of actions to continue to build on this progress and ultimately to improve the services for those with a neurological condition, no matter where in Wales somebody lives. I’d like to take this opportunity to thank those involved in the progress to date and offer my continued support and encouragement to those responsible for taking this forward.

All my questions have been raised with me by members of the Wales Neurological Alliance and the cross-party group on neurological conditions, which I chair. The revised neurological delivery plan acknowledges that national guidelines set out the Welsh Government’s expectation of effective care for people with a neurological condition, and the National Institute for Health and Care Excellence has published a set of recommendations for the NHS in England and Wales, allowing health boards and healthcare professionals to set what level of service they’re expected to provide for people living with multiple sclerosis. However, according to the Multiple Sclerosis Society Wales, the standard is not being met. What steps will, therefore, you take to ensure that local health boards provide the necessary baseline data that would afford a better understanding of MS treatments and services across Wales and enable the effective commissioning of services, and to ensure that the NICE quality standard for MS is implemented consistently across Wales?

Motor neurone disease kills a third of people within a year, and more than half within two years of diagnosis, typically as a result of respiratory failure. The Motor Neurone Disease Association supports the publication of this neurological conditions delivery plan, but they ask the Welsh Government to ensure that local health boards make local delivery plans publicly available and that local, easily accessible neurological service user forums are established as a priority to engage in a co-productive dialogue—a term you used—and allow public scrutiny and monitoring of local delivery plans. They ask the Welsh Government to produce annual reports, or ensure that local health boards produce annual reports, demonstrating clear and robust evidence of progress against key actions in language that is easily understood by those affected by neurological conditions, and they ask for equity of consideration to be given to rare neurological conditions like MND, motor neurone disease, and to ensure that action plans and annual reports provide robust condition-specific evidence against outcome indicators and assurance measures. So, I would ask you to respond to the asks from the Motor Neurone Disease Association.

In 2016, the implementation groups, you say in your statement, worked in partnership to develop patient-related experience measures and the patient-related outcome measures, or PREMs and PROMs. Neurophysiotherapists have pointed out that the key work of the cross-party group on neurological conditions has been done in highlighting the importance of rehabilitation services, and emphasised that a sustained focus on rehabilitation cannot be a one-off. They’re grateful that some of the new investment from the stroke and neurological delivery plans was directed at rehabilitation services, and they emphasised they have exceptional staff and skilled clinical experts, but want you to respond to their statement that they need to see continued development across Wales to retain and reward these staff.

The physiotherapy profession is very keen to see outcome measurements that are meaningful to patients and service users, and they refer to the work to develop the PROMs and PREMs as a very important way forward where clinicians need to measure the right things to demonstrate outcomes. Again, how do you respond to their statement that, equally, patients and service users need to be able to provide feedback on the services they receive?

Since the delivery plan started in 2014, the number of people living with dystonia in Wales has doubled to 5,000, and due to the demand on services for dystonia, especially Botox injections, there’s been no plan to make the treatment of dystonia sustainable in Wales. The Dystonia Society are therefore very concerned that continued cancellation of appointments in north and south Wales will lead patients and service users to seek deep brain stimulation surgery because of the worry of losing their jobs and their financial situations. How, therefore, do you respond to their recommendations that Botox clinics in north and south Wales must include a specialist dystonia physiotherapist in the clinic, that more awareness is needed locally, especially in GP surgeries, to bring down waiting times, that there’s a need for more training in ophthalmology and ENT regarding administering Botox injections, and a need for better holistic approaches, including psychological and emotional support? Then, finally, how would you respond to their concern that Wales is the only UK country not to have specialised consultants in dystonia, and the only place in the UK not to have specialised neurophysiotherapists?

In 2016, the Wales cancer patient experience survey highlighted how more than a third of high-grade brain tumours are diagnosed through an emergency admission to hospital. Greater awareness of brain tumour signs and symptoms is, according to the Brain Tumour Charity, critical to driving earlier diagnosis and improving patient outcomes. Therefore, can the Minister ensure that awareness-raising of brain tumours is prioritised in the implementation of this delivery plan?

Along with paediatricians, Bobath Wales, the specialist centre for children with cerebral palsy, are trying to establish a register for children in Wales who have cerebral palsy. What support for this is the Welsh Government able to provide?

I’ll conclude by referring to a presentation to the last north Wales meeting of the cross-party group on neurological conditions on 28 July, a presentation by the Welsh Health Specialised Services Committee. How do you respond to their statement in relation to provision of services for neurological patients with mental health problems that they’d only actually had two referrals from north Wales, and that they were concerned about where patients in north Wales with those dual diagnostic conditions were going? They expressed concern that few recommendations of successive reviews have actually been implemented, and they particularly highlighted the development of a north Wales neurorehabilitation service and the integration of the neuroradiology services across south Wales. Thank you.

Thank you for the large number of questions. I’ll try to run through a number of them, but I’ll be happy, if there are any that I’ve missed in the limited time available, to respond to correspondence directly from the alliance themselves, who of course I meet twice a year.

On your point abut NICE guidance, in particular about meeting standards on multiple sclerosis, of course we want our services to improve. What I think is really important in having a plan and having the reports is to recognise the progress we’ve made, but also, as I said, recognising what more we need to do. So, we don’t try and varnish where we are. We try and be upfront about the fact that we want to see further improvement. These are relatively rare conditions. Motor neurone disease, which you mentioned, and which Nick Ramsay regularly mentions in the Chamber as well, is a particularly rare condition. So, it’s covered by both the neurological conditions plan but also the rare diseases plan as well. I set that out, in fact, in the correspondence I sent to all Members in August, in response to questions and letters from Nick Ramsay and others.

So, in terms of where we’re getting about feedback and understanding whether we’re actually meeting our services, that’s part of the reason why the PROMs and PREMs work really matters—to understand what matters to the person and their family, what matters to them, and whether the experience of their care and treatment and the outcomes that matter to them are really being achieved and delivered. It’s really important to me that we achieve something that is understandable across the country and isn’t a tick-box exercise, but really helps us to understand what we’re currently delivering and where we need to improve, and then, of course, to understand whether we’re actually delivering that in practice. That will matter to people with MS, as well as to people with motor neurone disease and a range of the other areas that you’ve covered as well. I do take seriously the point about the need to get evidence of progress on a local basis, but in language that is easy to understand.

We recognise, in and around those people in the health service—including, if you like, the expert patients and advocates—that we can easily use language that is exclusionary and doesn’t make it easy for people to understand what we’re trying to get over and across. I think that is something the health service needs to guard against, so I take that on board and that’s something that I will look at.

On neurophysiotherapy and rehab services generally, I think the points you made, with respect, were covered in the statement, and not just the reference to PROMs in PREMs, but also the investment—the significant investment—by both the stroke implementation group and the neurological conditions group as well, recognising their shared interests in both raising awareness and improving the quality of that rehab service.

On dystonia, I had an opportunity to meet a group of dystonia patients previously, with Vikki Howells in her office in Cynon Valley, so I do recognise there are real concerns about the ability of our services both to have the capacity to deliver timely care, but also other services that take place. So, the issues that you raise have already been raised with me by Vikki and her constituents. We’ve arranged for contact to take place with Cardiff and Vale health board, which actually provides the service that her constituents would access.

Again, I take on board the point about awareness in local healthcare services—GPs and others—but also wanting to improve specialist services around those that are not just Botox clinics, but, as you say, physiotherapy as well.

On the points about cerebral palsy, I think that’s something I need to look at in terms of understating the lower number of referrals in and how we actually make sure that the health service properly understands both the need that exists in north Wales and how appropriately we’re responding to and managing that in the community.

Thank you very much for that update. I have four questions stemming from today’s statement. The first relates to expenditure. We heard in the statement that there was an increase of 65 per cent in expenditure on neurological conditions over the four years up to 2015. I wonder whether it would be possible to have an explanation for that particular trend, because it appears to be too much of an increase to have been driven by demographic factors alone.

In terms of PREMs and PROMs and the intention to develop a system that can bring outcomes that can be compared across health boards in Wales, I do welcome that. But, what consideration has been given to enable us to benchmark also against the other health services across the United Kingdom?

Thirdly, and speaking of that comparison with other countries, the Wales Neurological Alliance has said that Wales is falling behind in terms of waiting times for assessment. The statement that we have heard acknowledges that early diagnosis is vital, but what investment can you point towards that shows that the Government is trying to ensure that diagnosis does happen earlier?

Finally, ensuring that we do have a sufficient number of specialist nurses is vital for the care that is provided to patients. So, what resources are being provided to help to increase the appeal of working as a neurological nurse as a career, and to ensure that the support is available to enable nurses to pursue that particular career path?

Thank you for those questions. On your point about the increase in funding, we recognised that it’s a greater priority for us. Having the conditions plan itself has been a focus for attention. I think it’s a fact that reflects we’re better meeting the needs of people within the public, but also the progress in developing treatment. So, I don’t think there’s any suspicion about it, it’s really about how we make best use of that as well. I think it’s a good thing. We can point at the fact that we’re spending more on these particular conditions that affect a relatively wide range of people and can have a significant impact on them as well.

On your point about PROMs and PREMs and comparison with the other three nations of the UK, this is one of the challenges, isn’t it? Because if we develop bespoke measures in Wales that meet the needs of people here in Wales and you ask those people, ‘What matters to you, how do we record that properly, about your experience and your outcomes, as that helps us to drive where we are?’, the challenge will be that there may be different statements made or a different level of willingness to do so in other nations.

I’m certainly not going to try and speak for Jeremy Hunt on these issues, but I would not expect that he would be interested in developing a series of measures that properly take account of the experiences and desired outcomes for Welsh patients. I’m interested in doing the right thing here. I’d like to have a sensible conversation. Rather than with politicians, it’s probably easier across the service for patients, third sector groups and clinicians to have a conversation about the sort of measures and experiences that matter and whether there is a way to have something that allows you some form of comparison across the other UK nations. But I have to say, from my own point of view, whilst it would be desirable to do that, it isn’t my first point of interest in this work. My first point of interest is how do we make sure that we have a service that is properly responsive to what matters to the citizen in their experience and their outcomes, which helps to drive service improvement, service planning and delivery.

On investment and earlier diagnosis, this partly goes into our understanding of awareness, because awareness isn’t just for the general population, it is actually about healthcare professionals being able to spot earlier and refer people into the right part of a treatment and care pathway. So, that’s part of what we set out in terms of the priorities for the implementation group in the years ahead, and the challenge will be, given the basket of conditions we’re talking about, that some of that will vary from one condition to another. When we talk about someone, say, with cerebral palsy, well, that’s easier to understand in terms of how you diagnose than, say, for example, some of our more progressive conditions as well. So, there’s a challenge in understanding how we do all of that. So, rather than giving a one-size-fits-all, it’s really about how we invest in that wider picture.

And on your final point on nurses particularly—. And I’m pleased that you’re talking about a healthcare profession that is more than medicine, because we need to understand, in lots of the improvement that we see happening, that the role of nurses and specialist nurses in particular is really important in that, and that’s one of the things that we ought to try and highlight in the opportunities that exist within our system. It’s also part of when we look at, ‘What is the offer to encourage people to come in and to stay here in Wales?’—both people who are local and those who may want to move to come here as well. Interestingly, as I’ve been going around and about listening to healthcare staff, you do see a range of senior nurses who move for jobs and opportunities. I’ve met quite a few people who have positively moved from the system in England to either come to Wales or to come back to Wales as well. But I actually think the greater gain to be made is how we recruit, retain and train our own. Because many, many people going into nursing are local. The typical age, as you will know, of a nurse trainee going into the undergraduate programme is in the late twenties. These are mostly people who have responsibilities and ties and who are unlikely to be particularly mobile in the way that, for example—. Training people for medicine is one of our challenges. Getting people who are undergraduate and then keeping them is more difficult, rather than someone who’s in their late twenties. So, I’m particularly interested in seeing the success we’ll have with our broad ‘Train. Work. Live.’ campaign for nurses, to understand how successful we have been, and I think we’ll directly benefit patients in these areas, but also our staff and the opportunities we want to give them as well.

Thank you for your statement, Cabinet Secretary. Neurological conditions affect tens of thousands of people in Wales and this latest delivery plan will hopefully build upon the improvements made to the services designed to assist those people. While a number of neurological conditions present at birth, a large number can present at any time in life. It is therefore important that we raise awareness of these conditions, not only among the professionals, but also amongst the general public, as recognising the signs early will lead to earlier diagnosis and treatment. I welcome the emphasis the Welsh Government is placing upon improving awareness in this delivery plan. As the plan highlights, many neurological conditions have symptoms that can be mistaken for more common conditions, leading to misdiagnosis. Training primary care staff and healthcare teams to recognise the signs of neurological conditions will hopefully reduce the number of delayed or misdiagnosed patients.

Cabinet Secretary, the key actions for timely diagnosis require health boards to provide GPs with timely and direct access to CT scans. I very much welcome this move, but am concerned that we are not making the best use of diagnostic equipment. In many areas, CT scanners are not utilised 24/7. What is your Government doing to ensure that we have sufficient diagnostic staff to make use of our scanners at evenings and weekends?

One of the central pillars of the new delivery plan is ensuring fast, effective, safe care and rehabilitation. We have made a lot of progress in this area, particularly when it comes to approving new medicines for the treatment of neurological conditions, but we are taking too long in getting that treatment to patients. For example, MS patients had to wait nearly two years after Sativex was approved before they could receive it as the clinics needed to administer the drugs were not available.

Many of the new treatments in the pipeline for neurological conditions require monitoring and have to be administered in an outpatient clinic. In Cardiff, there is a six-week waiting list for drug infusions. Cabinet Secretary, what can your Government do to ensure that LHBs plan for the sufficient day beds needed to administer drugs, so there is no delay between approval by NICE or AWMSG and the treatment being available to patients?

Rehabilitation is vital to ensure that patients with neurological conditions—emergency admissions to hospital—. Unfortunately, waiting times for neurology rehabilitation are far too long. Cabinet Secretary, what is your Government doing to reduce waiting times for neuro rehab in Wales?

I fully support the direction you are taking with this latest plan, and look forward to working with you to ensure that we improve the outcomes for Welsh patients suffering with neurological conditions. Diolch yn fawr. Thank you very much.

Thank you for those questions. As you highlight, and as I said in my statement, there are more than 100,000 people in Wales affected by this group of conditions. On top of that, of course, there are their families and carers; there will be an impact on their lives too. I’ll just try and run through your questions. I think with the last point, I certainly tried to answer the point about improving neuro rehab, both in my statement but also in response to Mark Isherwood’s list of questions.

On the broader point about treatment delays from approval to provision, there is always something about how you plan to have a treatment provided once it’s gone through the appraisal process. We’re talking here about medicines rather than other forms of treatment. And there’s something also here about what we’re trying to improve more generally in the way that we manage the system in Wales. It’s why I’ve had very constructive conversations with the Association of the British Pharmaceutical Industry about how this works, and about having an earlier conversation as they have drugs in development and at what point the service will be aware of what they’re doing and what is likely to come up. Because part of the challenge in the past about having some of the variants in treatment in medicines being approved to being available has been the ability to plan for that service, to change different parts of the service itself. It wasn’t just as simple as dropping in a new medicine onto the scripts available, but actually what you need to plan around that as well. That did account for some of the delays in Sativex being available.

And, again, I wrote to Members in March to outline where we were, and I’ve had follow-up correspondence from the Multiple Sclerosis Society in Wales as well, which has been helpful, I think, to get to a point where we do now have genuine nationwide provision. There are particular challenges about having that whole pathway set up in south Wales that I think have been resolved, and if not the offer has been made for the MS Society to meet with the chair of Cardiff and Vale health board to run through any outstanding issues. I think it’s important that we recognise and to have an open door to understand what we can do to improve, but in north Wales there are particular challenges where people are going into the system in north-west England, where some people were not being prescribed Sativex by clinicians based in England, even though it was available for them as patients who were resident in Wales. That highlights the fact that this is an area where we’ve made more progress than other UK nations. We’re still the only UK nation to regularly make Sativex available within the United Kingdom.

On your point about the best use of diagnostic equipment, I think we need to think properly about how we plan and deliver the service, because we have the workforce that we have as well as the equipment. And, actually, we’ll need a workforce to be able to staff that equipment during use, and I need to be persuaded whether we do need more workforce available at different points in the day, and to make sure that equipment is available 24/7. Some of that depends on whether somebody is having an elective or an emergency admission, but, actually, I think that’s a proper case of workforce planning and not just having more equipment. We need to think about how we make best use of our capacity and ability across the system. But there is something there about local healthcare that, again, I think I tried to highlight in answer to other questions about how we equip and support people within our local health service, both to intervene and provide treatment and care when they could and should, as well as to diagnose whether these conditions are there and to understand how that treatment is progressing.

Thank you, Cabinet Secretary. I’d like to focus my contribution today on issues relating to dystonia, which is the third most common neurological condition in Wales but an issue where public awareness is generally low. And I’d like to thank you for coming to my constituency and meeting with constituents of mine who are members of the south Wales dystonia support group, and listening to their concerns around Botox treatment. You’ll be pleased to know that, since then, they’ve reported to me an improvement within that service, although I do agree with some of the comments that Mark Isherwood has also raised. So, without repeating those comments, my question to you is simply: with cases of dystonia being on the increase, how can the Welsh Government integrate the promotion of a better understanding of the condition into its delivery plan for neurological conditions?

The Llywydd took the Chair.

Thank you for the question and the focus point there on, as you say, the third most common neurological condition, and that is part of what we expect to see moving forward with this plan, because you can’t say you want a plan for an improvement in these services if you then ignore the third most common condition. I am pleased to hear directly from you that the meeting that we’ve had has made a difference for that group of patients, because I do recognise that the service was not in the place where we would want it to be, and the focus and the attention we brought with the chair of the health board and the leader from the health board—I’m pleased to see that’s making a difference. And the challenge now that this plan period covers is how we make that generally sustainable, and I think the continuous interest from Members such as you will ensure that this is a condition that isn’t going to slip off the agenda for our health boards.

Thank you, Cabinet Secretary.