Services to people with neurological conditions: progress review Contents

Conclusions and recommendations

1.There remains wide variation across the country in services and outcomes for people with neurological conditions. Diagnosing neurological conditions takes too long, services in hospitals are variable and local health and social care services are often poorly coordinated. The variation in services is resulting in variation in outcomes for people with neurological conditions. For example, the proportion of adults receiving treatment for epilepsy who remained seizure-free for 12 months ranged from 87% in South-West Lincolnshire to 47% in Hull and North Manchester in 2013–14. Clinical commissioning groups hold the key to improving services and outcomes and reducing variation. They need to be informed by good data on local performance, but progress in this area has been limited. From April 2016, NHS England plans to make more data available by issuing ‘commissioning for value’ data packs to clinical commissioning groups. The packs will include data on local outcomes, activity and costs for a range of neurological conditions.

Recommendations: NHS England should set out by April 2016: how it will use the new commissioning for value data packs to help clinical commissioning groups improve neurological services and reduce the variation in services and outcomes; and how it will then hold clinical commissioning groups to account for their performance in this regard.

2.The picture of variation in services and outcomes for people with neurological conditions is similar to that for people with diabetes, another long-term condition, on which we recently reported. NHS England needs to consider more widely how it can both: strengthen accountability for local services and outcomes within its overall approach to managing long-term conditions; and do more to help under-performing areas to improve.

3.NHS England is not meeting the objective that the Department set for it that everyone with a neurological condition should be offered a personalised care plan by 2015. The previous Committee recommended that everyone with a neurological condition should be offered a written care plan. Care plans are important in coordinating people’s treatment and helping them manage their conditions in the community. The Department’s mandate to NHS England includes an objective that everyone with a long-term condition, including a neurological condition, should be offered a personalised care plan by 2015. However, just 12% of people with a neurological condition have a written care plan. The Department sought to play down the significance of this shortcoming, stating that progress may not be being accurately measured and that patients may not be aware when they do have a care plan. We do not accept this defence since the Department is responsible for setting meaningful objectives for NHS England and for ensuring that robust arrangements are in place to measure progress.

Recommendation: The Department should confirm how it is measuring performance against the objective that everyone with a long-term condition should be offered a personalised care plan. NHS England should set out a timetable for meeting the objective and the Department should hold NHS England to account for achieving this timetable.

4.There is scope to give patients better access to neurologists by using existing resources more effectively. Over the last decade the number of neurologists in the NHS has grown by around 5% per year and there are now about 650 full-time equivalent consultant neurologists working in the NHS in England. We heard that neurologists needed to be better distributed across the country and that significantly more neurologists were needed to improve services, but NHS England stated that the rate of growth was unlikely to increase over the coming years. Access to neurologists varies across the country for both outpatient appointments and when patients are admitted to hospital. In some hospitals, a specialist neurologist may be available on only one or two days each week. There is potential to make better use of existing neurologists and improve access for patients, by re-designing services and by making more use of other clinical staff, particularly specialist nurses, to carry out tasks currently undertaken by neurologists.

Recommendation: NHS England should report back to us by April 2017 on what it has done to make best use of the available neurologists and reduce the variations in access, including through re-designing services and making more use of other clinical staff, particularly specialist nurses.

5.The abolition of the role of national clinical director for adult neurology would lead to a loss of clinical leadership and accountability. NHS England appointed a national clinical director for adult neurology in 2013, and he has clearly had a positive impact by providing clinical leadership at national level and promoting service improvement. NHS England is reviewing how the various national clinical director roles fit within the broader structure of clinical leadership. While the review had not come to a final conclusion at the time of our evidence session, NHS England indicated that it did not plan to reappoint the national clinical director for adult neurology as it intended to focus on priority areas such as cancer. Instead it envisaged neurology being led in a collaborative way, based around strategic clinical networks. We are not convinced that this would be an effective approach as having a named individual has been shown to strengthen leadership and accountability. We would highlight in particular the impact that the former national clinical director for cancer had in driving improvements in these services.

Recommendation: NHS England should retain the role of national clinical director for adult neurology.

6.The Department and NHS England have no plans to improve the linking of health and social care data beyond the ‘’ initiative, which is unlikely to be implemented before 2020 at the earliest. The previous Committee recommended in 2012 that national datasets should link health and social care data, using the existing NHS numbers to provide a complete view of all the services that patients are receiving. The Department accepted the Committee’s recommendation at the time, but there has been no progress over the last three years. Both the Department and NHS England acknowledged the importance of linking data but said that a generic solution had to be found covering all conditions to avoid the need for inefficient one-off data collections. The Department’s proposed solution to linking data is the initiative, which it hopes will be in place before 2020. It said that, following the spending review, funding was available to invest in technology and that the Secretary of State had commissioned a review of the legal issues around However, the initiative has had a troubled history and has made little progress to date. More widely, the Department has a poor record of implementing IT programmes successfully.

Recommendation: The Department should report back to us by April 2016 setting out how it plans to link health and social care data, including a clear timetable for when it expects care data to be fully implemented across the NHS.

7.The confusion over commissioning responsibilities is leading to ineffective commissioning of neurological services. The reforms to the health system in 2013 split responsibility for commissioning healthcare–NHS England now commissions specialised services with local clinical commissioning groups responsible for other services. However, for neurology, what constitutes specialised services has not been clear and this has caused confusion over who should be commissioning which services. Clinical commissioning groups have tended not to engage effectively with neurological services as they believe responsibility for these services rests with NHS England. In April 2016, NHS England plans to introduce changes which will mean all neurology outpatient services will be commissioned by clinical commissioning groups.

Recommendation: NHS England should set out clearly by April 2016 which neurological services are specialised services to be commissioned by NHS England and which services should be commissioned locally by clinical commissioning groups.

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Prepared 18 February 2016