The Neurological Alliance is chairing the main day of the HSJ’s conference, Delivering Patient Centred Neurological Services, in London this week.Clare Moonan and Katie Smith, chief executives of the Neurological Alliance, say that the Alliance has been a key partner in shaping this unique event which has a central theme of improving efficiency and patient care in neurological services.

This is an ideal time to examine services for neurology. We are half way through a ten-year national strategy for service development and, while progress has stalled in the first five years, we are hopeful that our new government will create the conditions necessary for a much more successful second half.

The new government plans to remove top-down decision making and potentially abolish strategic health authorities to give greater power to frontline staff in deciding how to meet the needs of local communities. It also wants to give patients a much bigger voice and more control over their care.

Voluntary organisations representing patients, such as those in the Alliance, are perfectly placed to strengthen and support this new vision. We can present a unified patient voice to health professionals and give the benefit of our shared experience to the shaping of improved services.

A picture of neurological conditions

Eight million people in England live with a neurological condition – one in six of the population. Neurological conditions can affect anyone of any age but an aging population means that this number will grow steadily over the coming decades.

Most people with a neurological condition will be significant users of services provided by the NHS, local authority and independent sectors. Their needs change, suddenly or over time, requiring complex, multi-disciplinary care over a number of years, usually until the end of their lives.

The Neurological Alliance is the collective voice of England’s brain and spinal charities, with 69 member organisations. It exists to drive forward implementation of national neurology strategies, raise awareness of neurological conditions and to speak on behalf of the neurological community.

Delivering Patient Centred Neurological Services will look at current provision of services for neurological conditions and examine what works and what doesn’t. It is designed to help health and social care professionals acquire the knowledge and understanding needed to plan quality services and improve patient outcomes in the most cost-effective way.

A national framework

As far as many neurological conditions are concerned, the fundamental principles of good quality care are enshrined in the National Service Framework for Long-term (Neurological) Conditions (NSF LTNC).

Launched in 2005, the NSF LTNC is a common vision of the services that people with a neurological condition should be able to expect: a vision of quality and equality. It is a ten-year plan to achieve 11 quality requirements including a patient-centred service, early diagnosis and treatment, rehabilitation, palliative care and supporting families and carers.

Everyone, from service users to civil servants, agrees that achieving these quality requirements would radically improve wellbeing and health outcomes for people with a neurological condition. Despite this, over five years later, the evidence shows that neurological care is rarely prioritised by commissioners at a local level.

A scoping exercise by researchers at the University of York[1] revealed widespread concern among the neurological community that the NSF LTNC was not having the desired impact on services on the ground.  

The government has commissioned a mid-term review of the NSF LTNC, the progress of which will be reported on at the conference.

The reality of service provision

Countless other reports and parliamentary enquiries since the launch of the NSF LTNC demonstrate that neurological conditions do not receive the attention they deserve. Neurological conditions are more prevalent than cancer or diabetes but have yet to receive the same focus or funding.

Any examination of services for an individual neurological condition will reveal poor access to information, delays in referral to specialist care and lack of consistency in accessing effective rehabilitation, palliative care, social care and support for carers.

Poor service provision can have severe consequences. In 2007, an enquiry by the All-Party Parliamentary Group on Epilepsy concluded that 400 deaths could be avoided every year in England if epilepsy services were properly delivered[2].

As well as the human cost, there is the economic fallout. Delays in diagnosis can lead to social isolation and missed educational opportunities. Lack of access to early preventative care and fragmented community care increase the need for expensive emergency intervention later on.

Without tailored care and support, people with neurological conditions often find themselves unable to remain in employment or to maintain a good attendance at work. An estimated 25 million days are lost from work or school because of migraine alone each year.[3]

Getting it right

There is good news, however. There are pockets of good practice, where strong local leadership has led to significantly improved services and some truly innovative solutions have been implemented.

The voluntary sector can help, and members of the Neurological Alliance have been instrumental in improving services on the ground.

Several, including Parkinson’s UK and Epilepsy Action, are known for funding and supporting specialist nurses while others are involved in pilot projects around the country.

Ataxia UK, for example, has set up three specialist centres, with two more in the pipeline, based around a model of patient-centred care. Patients see specialist neurologists and have access to an ataxia nurse who can provide a constant point of contact and coordinate referrals to other services. Patient feedback has so far been very positive.

Sue Ryder Care has developed and piloted a number of tools designed to improve quality of end of life care, which again are proving very effective.

Crucially, organisations such as the Neurological Alliance can facilitate essential dialogue between those who provide services and those who use them.

Partnership between the NHS and service users is a key quality marker for the Government, and voluntary organisations have a vital role to play in making patient voices heard.

As part of the conference, representatives of the Neurological Alliance will be delivering a session on engaging patients to improve commissioning for neurological services. It will cover how we believe the experience of service users can be used to commission better services, how to understand the changing patient demand and the impact on commissioning in the future, and how ensuring appropriate capacity and capability can provide equal access to care.

The HSJ and the Neurological Alliance will be using this important conference as an opportunity to assess the delivery of patient-centred neurology services that improve quality, efficiency and patient care, both nationally and within the community.

It will also provide a jumping off point for the implementation of the second five years of the NSF LTNC, the success of which will depend on our collective ability to identify and disseminate good practice, provide evidence of need and cost-effectiveness, and identify local NSF LTNC champions who can take a lead in driving the change that is so desperately needed in neurological services.

[1]Bernard, Sylvia. Aspinal, Fiona. Gridley, Kate. Parker, Gillian.Integrated policy making in England for adults with long-term neurological conditions: somepreliminary findings from a scoping study. International Journal of Integrated Care - Vol. 8, 14 July 2008

[2]All-Party Parliamentary Group on Epilepsy 2007 Wasted Money, Wasted Lives

[3]Steiner et al. Cephalalgia, 2003