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Lost to follow up: what are the implications?

Dr Yogendrainh Jagatsinh, Specialist Registrar Rehabilitation Medicine
Walkergate Park Centre for Neurorehabilitation, Newcastle-upon-Tyne

Way Ahead 2009;13(2):8-9

The NICE MS guidelines[1] state that specialist neurological and neurological rehabilitation services should be available to every person with MS, when they need them. These needs may arise because of new symptoms, disease progression, loss of function, or when an individual's circumstances change. Yet for a significant proportion of the MS population, such services are geographically inaccessible. Here, Dr Jagatsinh discusses the problems posed by geographically isolated areas across the UK, and how the problem can be overcome through the development of local outreach services such as one that was established in North Northumberland in 2007.

Introduction

A remote cottage

MS is a very variable and individual condition. A person may see changes in the way they are affected by their MS as a result of a relapse, progression of the condition, the presentation of new symptoms or secondary complications. If there is no regular review in place, such problems often go untreated and unmanaged.

This was the case for a significant number of people with MS living in Northumberland, who were situated approximately 70 miles away from their nearest specialist MS centres based in either Edinburgh or Newcastle. It emerged that the distance between Northumberland and the nearest specialist MS centre proved a significant barrier for people with MS who were consequently 'lost to follow up'. Worryingly, people with MS living in this area had often had no contact with neurological services since initial diagnosis and a period of preliminary interventions.

Benefits of an outreach service

To address this problem, an outreach service was developed in Berwick-upon-Tweed, Northumberland. The service offers access to an MS specialist nurse and a neuro-physiotherapist as well as a range of complementary therapies such as reiki, Indian head massage, hot stone massage and reflexology. People with MS, and their families and carers, were invited to attend the service which is available twice a month after normal working hours, from 5pm until 8pm. In addition to the professional advice, support, and complementary therapies that are available, the outreach service also provides a social opportunity for individuals to chat informally amongst themselves. Occasionally, guest speakers give talks on topics relating to the management of MS.

Since the service was introduced in 2007, it has welcomed 39 service users from both sides of the border. 29 patients had problems requiring treatment and/or referral. As a result of informal consultations/discussions at the outreach centre, a number of referrals have been made. Amongst the problems people presented with were: bladder dysfunction, trigeminal neuralgia, musculoskeletal pain and stiffness, mobility and posture, social and sexual health issues.

Tellingly, many of the patients attending the out-reach service had no regular follow-up and had simply 'got on with things', not realising that help might exist for symptoms. Feedback from both people with MS and carers using the service suggests that they value the opportunity to discuss problems and issues that would otherwise have gone unacknowledged and potentially untreated. Encouragingly, funding for the outreach service has been secured for a further three years from the MS Research and Relief Fund and the local branch of MS Scotland. The venue is provided by Northumbria Foundation NHS Trust, and a local organisation supported the purchase of physiotherapy equipment. Voluntary sector partnership has been crucial to this innovative service development which is now recognised amongst the local MS population as a locally based, high quality, multidisciplinary clinic.

Furthermore, the principles outlined in the recent Lord Darzi review support the creation of such services. The NHS Next Stage Review[2] states:

People want a greater degree of control and influence over their health and healthcare. If anything, this is even more important for those who for a variety of reasons find it harder to seek out services or make themselves heard. Personalising services means making services fit for everyone's needs. When they need it, all patients want care that is personal to them.

A distance of 70 miles may indeed make it difficult for people with MS to seek out services for themselves and to access a personalised care plan. If people with MS are unaware of available services they may not seek help and may continue to struggle with problems that can be treated. If, as the Darzi report suggests, everyone with a long term condition is to have a personalised care plan, follow-up needs to be accessible and available locally. Where outreach services cannot provide the necessary specialist care or treatment, they can at least 'signpost' these patients to an appropriate specialist.

North Northumberland is not unique in its geographical detachment from specialist MS centres. Indeed, two similarly geographically isolated areas where this model could be applied with great effect are West Northumberland and the western Scottish Borders. Plans are currently underway to develop a similar service in Hexham, West Northumberland, which is expected to open in Spring 2009.

Service users of the outreach clinic set up in Berwick-upon-Tweed have highlighted the importance of regular contact with healthcare professionals. Every person with MS who has been seen by a specialist neurological or neurological rehabilitation service should be informed about how to make contact with the service when he or she is no longer under regular treatment or review. The individual should be given guidance on when such contact is appropriate. The informal, patient-led approach provided by an out-reach service gives people with MS the opportunity to link back into a review system according to their individual needs.

This particular case highlights the need for co-ordinated service planning to ensure that suitable services are available to people with MS within a reasonable travelling distance. Where this is not possible the establishment of satellite services or peripatetic teams ought to be considered.

References

  1. National Institute for Clinical Excellence.
    Multiple sclerosis: management of multiple sclerosis in primary and secondary care.
    NICE Clinical Guideline 8. London: NICE; 2003.
  2. Darzi A.
    High quality care for all: NHS Next Stage Review final report.
    London: DH; 2008.
  3. Department of Health.
    The National Service Framework for long-term conditions.
    London: DH; 2005.

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