Published: 05/05/2005, Volume II5, No. 5954 Page 20 21 22

March's publication of a national service framework for people living with long-term neurological conditions has been welcomed as the first NSF to be patient focused. But much of its success must depend on rigorous implementation of its quality standards. Ann Dix reports

Whatever the outcome of this week's general election, improving care for people with longterm conditions is set to stay high on the political agenda. Recent Labour government initiatives have ranged from a US-inspired pyramid model of care aimed at keeping people out of hospital to a raft of disease-specific reports and guidelines.

This March saw another landmark publication - a national service framework for the 10 million people in the UK living with long-term neurological conditions.

Neurological conditions are wide ranging, including everything from migraine to acquired head and spinal injuries and chronic diseases such as Parkinson's disease and multiple sclerosis.

Together they account for a fifth of all acute hospital admissions and are the third most common reason for seeing a GP.

Patients need access to a wide range of specialist services and support, not just at the outset but throughout their lives, often involving multiple agencies across many different sectors.

The framework proposes a structured and systematic approach to the whole patient journey, to improve diagnosis and treatment and enable people living with these often disabling and painful conditions to lead as normal a life as possible. This includes providing rapid and continuing access to specialist services, joined-up working between services and better information for patients to become involved in their own care.

The framework sets out 11 quality requirements underpinned by 'evidence-based markers of good practice' covering treatment, care and support for patients from diagnosis to end of life, to be met by the NHS and local authorities within the next 10 years. This is supported by a web-based good practice guide and information strategy.

But while the NSF has been welcomed by professional and patient groups, there are concerns that it lacks the funding or the teeth to achieve the wholesale change that is needed.

David Pink, chief executive of the charities umbrella group, the Long Term Medical Conditions Alliance, was on the framework's external reference group. 'The biggest challenge is going to be getting acceptance within the NHS that it is a priority', when it doesn't have any targets or milestones, he says. 'The hope is that the NHS, particularly primary care trusts, will engage with it because It is relevant to a large slice of their patient population.' The NSF states that the NHS and local authorities will have to show progress against the standards over the course of an initial three-year planning period. It goes on to suggest the Healthcare Commission and the Commission for Social Care Inspection will have a monitoring role.

But there are concerns as to how this will be achieved.

Professor Christopher Kennard, outgoing president of the Association of British Neurologists, says the new framework 'undoubtedly will do a lot to improve services...'.

'We particularly welcome the fact that it deals with the full patient journey.' But he stresses: 'The Healthcare Commission have an absolutely critical role in this to make sure the standards are going to be met. But they are a new set-up, and whether they can deliver on that I do not know.' He sees the other major problem as the shortage of specialist neurology staff. 'The NSF says there needs to be a very rapid input of neurologists into acute care.' But because there hasn't been the necessary expansion of trainees, 'this is just not possible at the moment'. He adds that the shortage is so acute some centres 'are not even bothering to advertise posts'. There are currently around 450 neurologists (390 wholetime equivalents) nationwide, he says. Their numbers would have to more than triple to provide the rapid-response, round-the-clock service envisaged by the framework. A shortage of other specialist staff, such as nurses and GPs with special interests, only worsens the problem.

Judith Kidd, chief executive of the Neurological Alliance, representing 52 national charities, describes the framework as 'staggeringly good' and 'revolutionary' in the way it centres on the needs of patients and carers. If the approach was adopted by the whole of the NHS, patients would be better off, she said. She also praises the framework's multi-agency approach, saying that proposals for health and social care to pool budgets and structures 'make obvious sense'.

Implementation doubts

But she expresses, 'uncertainty and doubt' around the levers for implementation. These are cited by the framework as consisting of government targets to offer a personalised care plan for vulnerable people most at risk, as well as achieving a 5 per cent reduction in emergency bed days and an 18-week waiting time from GP referral to hospital treatment by 2008. 'Given the breadth and scope of the NSF, I am not sure that these levers are quite powerful enough to move people who do not want to be moved, ' she says.

She believes that rather than focusing on 'governance issues', which 'might be a good idea but are not that urgent', the Healthcare Commission needs to look at 'what's been done and whether It is enough'. In addition, 'the DoH needs to explain the parameters for failure and the awards for compliance.' She is also sceptical about the framework's assertion that 'the NSF places no new requirements on local authorities', which are expected to implement it 'within existing spending plans'. 'As diagnosis improves that will put an additional load on services. I am not sure whether That is been anticipated.' Jane Hanna, director of Epilepsy Bereaved, welcomes the framework. But she fears the government emphasis on reducing hospital admissions could result in epilepsy patients losing out. A DoH model for people with long-term conditions, published in January this year, focuses resources on case-managing vulnerable people who are frequently admitted to hospital. But Ms Hanna says this will not benefit people with epilepsy. 'The majority of epilepsy patients are treated outside the hospital in the community and the only time they would need a hospital is if they have a seizure and have to visit accident and emergency, ' she says.

She is also concerned about the framework's focus on the 18-week waiting target to see a specialist, when National Institute for Clinical Excellence guidelines state that people with suspected epilepsy should be seen by a specialist within two weeks. 'There is a danger that this will distort priorities, ' she says.

'The NSF is a big mountain to climb and managers are bound to make choices... The key issue is that the government makes sure there is monitoring of progress for all conditions affected by the NSF, ' and that 'people with epilepsy get a report on progress', she says.

David Pink believes the fit between the framework and the DoH model for reducing hospital admissions - for which the evidence is 'not clear cut' - is 'not as good as it should be'.

Earlier this month health minister John Hutton confirmed that individual care plans should only be provided for the most vulnerable patients, as defined by the DoH model, although the Labour manifesto has since pledged to 'extend casemanagement for the 18 million people with longterm conditions'. But Mr Pink claims this is at odds with the framework, which he says would require all people with long-term neurological conditions to have one, something which The Long Term Medical Conditions Alliance is campaigning for.

Barbara Howe, director of specialised commissioning for north-east London, jointly chaired the NSF's framework implementation group. The starting point is setting up multi-disciplinary and multi-agency neuroscience networks to coordinate the planning, commissioning and provision of services across geographical areas, she says. 'The idea is to start mapping the services you have against the quality requirements and start to draw up a plan. She stresses it is 'crucial to involve users, who will know better than anyone where the gaps are. Often the services are there.

They just need to be delivered in a more integrated way.' 'In the past services have been patchy, with patients passed from one organisation to another, ' she says. 'Professionals find it hard enough, but when you see how complicated services are, you think what a nightmare for patients.'

'We wanted people to try to think of different ways of managing services with patients at the centre, such as appointing a link worker so that patients can easily reaccess services without going through a long-winded referral process.' But mapping of neurological services is not for the faint-hearted, as Cynthia Atkin, can testify. Ms Atkin is responsible for service development for the North of England and Yorkshire region of the Multiple Sclerosis Society, which has set up a regional partnership forum.

This brings professionals together to give a more integrated approach, she says. For the past three years they have been attempting to map out MS services over the north of England, and finally hope to complete next year. 'Collecting the information has been quite a challenge, ' she says.

David Pink says it will be easy to see if the NHS is helping to put such plans in place, 'The first important accountability step is for the Healthcare Commission, health patient groups or professional bodies to ensure that the NHS is taking the next steps outlined in the framework, he says. 'In each PCT there should be an implementation plan, documented, and in the public domain. If this doesn't take place within six to eight months, then I think we could say the NHS is not engaging with this NSF.'



Service providers who pre-empted the framework:

Headway Dorset

This project (pictured above) shows how the voluntary sector can get involved in service provision. Headway Dorset has a pooled service agreement with health and social services to provide a community brain injury service for all of Dorset.

It offers a range of other services for people with head injury, their families and carers.

A recent contract with Poole primary care trust involves a brain injury liaison nurse working at Poole Hospital trust, aiming to ensure safer discharge and reduce the length of hospital stay.

Chief executive Sue Mottram says Dorset has over 2,000 head injuries a year. 'The NSF's quality standards, and the detail it provides on rehabilitation will help us push for new services, ' she says.

Buckinghamshire brain injury network

Andy Tyerman is consultant clinical neuropsychologist with the Vale of Aylesbury PCT community head injury service, which serves Buckinghamshire. As well as helping with the early stages of recovery, it offers longer term support for patients and their carers.

The establishment of a county-wide brain injury network has led to good co-ordination of community services, he says. 'But to be effective for all conditions we need to link up with hospitals and neuroscience centres.

'We hope to use the NSF as a catalyst to review services across set areas and across the whole range of neurological conditions.'

Neurology outreach therapy service

This physiotherapy-led service is paid for by North Trent Commissioners and operates from Sheffield Teaching Hospital foundation trust. It offers multi-disciplinary support in the community for people with any neurological condition.

Jane Petty, specialist physiotherapist and clinical lead, says the service provides a link between primary and secondary care, giving people one point of contact to make service access easier.

'It is about promoting the pathway of care and making sure things happen at the right time before people develop complications, ' she says.


Head injury affects all ages and is a major cause of long-term disability, with resource issues and implications across a range of services. In the UK, approximately 420,000 people are experiencing long-term problems following head injury, with 175 new cases per 100,000 population each year.

The national service framework for long-term neurological conditions provides much-needed guidelines for a wide range of long-term conditions, including head injury. But there are concerns about its implementation (see main article).

Standards are a powerful tool in the development and implementation of robust service frameworks as they enable service planners and providers to measure differences between local and best care and identify how and where to prioritise in order to close the gap. They also enable regular monitoring and evaluation of performance. The Department of Health is paying attention to the development of standards for better health.

The Cambridge-based Eastern Head Injury Group (EHIG) has developed standards of care in head injury, from admission to rehabilitation. This followed a survey in the east of England - representing 10 per cent of the UK population - which showed large gaps, deficiencies and variability of service provision.

The standards are consistent with National Institute for Clinical Excellence guidelines for the early management of head injury and the NSF's 11 quality standards. They cover seven topics relating to all aspects of service delivery: resources, delivery and organisation, networking, communication, facilities for follow-up, guidelines and audit.

Each standard has a priority level (A, B and C). There are 15 level-A standards requiring immediate implementation, 20 level-B standards and three level-C standards requiring plans to be put in place over one to two years.

An EHIG survey in the 20 hospitals of the eastern region in 2004 found only a third of these standards were being fully met. The remaining two thirds were either partially met or not met at all.

Implementation of national guidelines, strategic organisation, work force planning and resources were identified as priority areas.

Our work indicates that head injury standards, with their whole-systems approach, are essential to improving and monitoring quality of care, both within organisations and regionally. They will be a powerful influence in the complex implementation process of the NSF.

Chris Maimaris is an A&E consultant and Helen Seeley is clinical auditor and researcher at Addenbrooke's Hospital, Cambridge.

www. hsj. co. uk/clinical

Find out more Long Term Conditions National Service Framework.

www. dh. gov. uk/longtermnsf

Action on Neurology. Improving Neurology Services - a practical guide. Modernisation Agency. March 2005.

www. natpact. nhs. uk/news/index. php? article_ request=1377

Supporting People with Long Term Conditions: an NHS and social care model to support local innovation and integration. January 2005.

www. dh. gov. uk

Key points

Neurological conditions account for a f ifth of all acute hospital admissions.

The long-term neurological conditions NSF takes a structured approach to improving the patient journey.

The Healthcare Commission will have a crucial role in ensuring implementation.