Quality requirement 2: Early recognition, prompt diagnosis and treatment

Examples of good practice from the Action on Neurology pilots.

‘Getting to Grips’, a course for people newly diagnosed with multiple sclerosis (MS) run by statutory and voluntary sector providers, is just one initiative developed by this team. It runs a variety of courses for people with MS as part of their specialist ongoing treatment provision.

The clinic investigates people suspected of having a demyelinating disease. The clinic aims to minimise the time between referral and completion of tests by offering same day tests and follow-up within four weeks. The clinic also provides an appropriate setting and experienced professional support to deal with the initial psychological impact of the diagnosis.

The Huntington’s Disease (HD) Clinic provides a specialist multidisciplinary service to people at different stages of HD, from those who are at risk of the condition and thinking of undergoing pre-symptomatic testing to those who are in the later stages of the disease. The multidisciplinary care approach is positively evaluated by service users, and the team is happy to share their practice and welcomes visitors to observe how the clinic works. The team has produced a clinic information leaflet, and it also sends out an annual newsletter to all patients attending the clinic to update them on significant developments in HD including their own research projects, both of which could be useful templates for other multidisciplinary clinics.

The clinic takes a person-centred approach to educating people about their symptoms so they can modify their behaviour and use the most appropriate strategy to control their symptoms. The lead clinician is a GP who has a special interest in headache and is part of a multidisciplinary team. The clinic has set up a specific patient pathway for this service.

The clinic acts as a ‘one-stop shop’ with co-ordinated multi-professional care, where people can see a neurologist, therapists and a co-ordinator at the weekly motor neurone disease clinic. Carers are specifically offered separate time with the neurologist and/or centre co-ordinator. The team has developed protocols for giving the diagnosis as well as guidelines for nutritional management and respiratory assessment and care.

At this centre, a fortnightly diagnostic/new patient clinic is held in the Neurophysiology Department, which has reduced the time from referral to diagnosis for people with suspected MND. On alternate weeks, there is a multidisciplinary review clinic. In addition, the team has developed various pathways for symptom management.

The Motor Neurone Disease (MND) Association funds a network of twelve MND Care Centres based in regional neuroscience centres. They deliver high quality coordinated assessment and management of care to all people with confirmed or suspected MND in line with the Association’s Standards of Care. The individual centres have developed a number of resources and different ways of working which they are willing to share including fast-track diagnostic clinics, nurse-led clinics, taped consultations, development of advance directives and preferred place of care for specific use in MND, MND care pathways and review processes, carers’ information days, links with local ambulance services, use of volunteers in clinics, and education for staff in primary and secondary care.

The team operates to a model of care described in the Health Advisory Service document Heading for Better Care which describes how care be provided within current services for people with less common conditions such as Early Onset Dementia, Huntington’s Disease and Traumatic Brain Injury. In applying this model to people with Motor Neurone Disease (MND), a number of local health and social care professionals and care providers came together to form a project group which in turn led to the formation of the MND Community Response Team. The team are happy to share their experiences of using this model of care to set up and develop their service, and to describe their achievements to date. This model can be applied to other conditions.

The clinic provides a range of services, including genetic testing and pre-test counselling, psychosocial support for people with Huntington’s disease and their family/carers, information about current research and the opportunity to take part in research trials.

New referrals are first seen at home by the Parkinson’s disease nurses for full assessment, (usually within three weeks of their referral), and subsequently in a local specialist clinic. Each person has a named Parkinson’s disease nurse who they can access through nurse-led clinics, home visits or telephone. Contact with a named PD nurse can be either at a review or whenever the individual requires it.

The Academy delivers masterclasses in Parkinson’s disease in order to increase the number of clinicians with specialist skills who can develop specialist Parkinson’s disease services closer to where people live. The course takes a holistic approach to managing Parkinson’s disease, has multidisciplinary input and involves individuals and their carers throughout.

The multidisciplinary Parkinson’s disease (PD) clinic offers a patient-centred holistic approach to the care of people with PD. Resources that the team have developed and are willing to share/discuss include new medical assessment forms, an audit tool to evaluate the service, a multidisciplinary group educational programme soon to include input from service users as expert patients and carers, complementary therapy and a monthly group for carers.

The service provides support and advice to people with multiple sclerosis. A self-referral system for people requiring a review and a fast-track relapse service have improved service responsiveness.

The Spasticity Service offers comprehensive multidisciplinary assessment, treatment and follow-up to patients with spasticity. An Integrated Care Pathway is used which ensures that for the majority of patients a single clinic visit is sufficient for assessment and initial management of their spasticity. A variety of treatments for spasticity are available including Botox, functional electrical stimulation and intrathecal therapies. The team has developed a number of protocols and treatment algorithms and are compiling them into a manual which they are willing to share.

The service has been established through multi-agency collaboration. It has developed a shared-care protocol for GP referral, assessment, diagnosis and ongoing support, and publicises this in primary care using leaflets.