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Quality requirement 2: Early recognition, prompt diagnosis and treatment

People suspected of having a neurological condition are to have prompt access to specialist neurological expertise for an accurate diagnosis and treatment as close to home as possible.

Action on Neurology programme

See pages 22-29 and 50 of the Action on Neurology report for information on:

Clinical Nurse Specialist for Rare Neurological Conditions, West Berkshire

The Berkshire West Rare Neurological Conditions Nurse Specialist post was initially funded by 4 local charities, and, following positive findings of an impact study, is now funded by the NHS.

The post is 80% community based, with a strong emphasis on prevention. The nurse provides support and interventions which among other things reduce hospitalisation rates and other undesirable experiences for patients affected by rarer neurological conditions. The post has been found to be both clinically and cost effective by independent research conducted by Reading University showing a payback of over twice the cost, coupled with very strong approval ratings from patients and carers.

Community MS Team (CMST), Regional Neurological Rehabilitation Centre, Newcastle

The team was set up in 1995 as a joint venture between health, social services and the local branch of the Multiple Sclerosis Society. It has close links with all professionals providing services for people with multiple sclerosis (MS) in the area, and is a member of the Regional Partnership Forum, (a Multiple Sclerosis Society initiative to improve service for people with MS). It brings together all regional charities, health and social care providers.

Demyelinating Disease Diagnostic Clinic, National Hospital for Neurology and Neurosurgery, London

The Demyelinating Disease Diagnostic Clinic (DDC) was set up in 1997 to investigate people suspected of having a demyelinating disease, primarily multiple sclerosis (MS). The clinic was modelled on the UK Multiple Sclerosis Society diagnostic phase standards. GPs and neurologists refer people suspected of having MS to the clinic.

GPwSI Neurology & MS Clinic, Darent Valley Hospital, Dartford

The MS service in Dartford is the product of a collaboration between the PCT, the acute Trust, the private and the voluntary sectors. A multidisciplinary team which includes a neurologist, GPwSI, MS nurse specialist, allied health professionals, continence adviser, counsellor and MS Society volunteers delivers a seamless, responsive and individually-tailored service to people with MS in line with the NICE MS Clinical Guidelines.

Huntington's Disease Clinic, Brain Repair Centre, Addenbrooke's Hospital, Cambridge

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 Headache Clinic, York Hospital

The clinic adopts a person-centred holistic approach to enable people to understand their symptoms so that they are able to modify their behaviour and use the most appropriate strategy to control their symptoms. The lead clinician at the clinic is a GP with a special interest in headache who works as part of a multidisciplinary team. This team includes specialist nurses, a clinical psychologist and a physiotherapist trained in Chinese medicine.

The King's Motor Nerve Clinic at King's College Hospital, London

King's College Hospital has a well established Motor Neurone Disease Care & Research Centre, which holds outpatient clinics, clinical trials and research. The Centre aims to provide co-ordinated and holistic care according to the Motor Neurone Disease Association's Standards of Care, and to carry out research in partnership with people affected by motor neurone disease. The centre is actively involved in developing new treatments and in broadening the remit of palliative care.

Motor Neurone Disease Care Centre, Manchester

A fortnightly diagnostic/new referral clinic is held in the Neurophysiology Department which has reduced the time from referral to diagnosis for people with suspected motor neurone disease (MND). Both the neurologist and the Motor Neurone Disease Care Centre Co-ordinator are present, with equipment available for diagnostic investigations as indicated. There is a protocol for giving diagnosis which involves both professionals, the individual and their family.

Motor Neurone Disease Care Centre Programme

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.

Motor Neurone Disease Community Response Team, Warrington

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.

MS Service, Gloucestershire Royal Hospital

The Neurology Department in this small district general hospital has developed a locally responsive service with accelerated access to care for people with multiple sclerosis through the development of a neurological nurse consultant role  Performing of elective lumbar punctures supported by patient selection protocols and competence-based training, and a nurse-led helpline and relapse clinic with admitting rights to the day case unit for intravenous methylprednisolone with non-medical prescribing have been key to reducing waiting times to under 4 weeks and 1 week respectively, with no detriment to patient safety and outcomes, and modest cost savings.

Multiple Sclerosis Specialist Occupational Therapist, West Berkshire

The MS Specialist OT acts as a specialist caseworker, providing support to people with MS in the local community. People with MS have direct access to her for advice and information, and for signposting and referral to other health and social care services. The OT is willing to share her staff training programme and other literature about MS that has been developed locally.

National Hospital for Neurology, Multidisciplinary Huntington's Disease Clinic , London

The specialist Multidisciplinary Huntington's Disease Clinic at the National Hospital for Neurology and Neurosurgery (NHNN) sees people at various different stages of Huntington's disease and runs twice a month.

Neurology Integrated Clinical Assessment & Treatment Service (ICATS), Salford

The Tier 2 neurology service was developed as an Action on Neurology pilot project. It was a primary care initiative set up to enhance the management of diagnosed and suspected epilepsy and headache patients. The Tier 2 Neurology services main aim was to improve this patient journey.

North Northumberland MS Service: multi-disciplinary clinic

The service aims to provide a high quality rehabilitation service for people with MS in North Northumberland, the clinic was set up to address barriers of service provision in a predominantly rural area

The Northumbria Healthcare Parkinson's Disease Service, Tyne & Wear

The Northumbria Parkinson's Disease (PD) Service was established in 1995 and serves a population of 500,000. There is an open-referral policy which includes self-referral.

The Parkinson's Academy

The Parkinson's Academy delivers master classes in Parkinson's disease (PD) with the aim of increasing the number of clinicians with specialist skills. Training, mentorship and assisted service development for geriatricians and GPs will enable clinicians to set up new PD services away from neuroscience centres and closer to where people live. It is a joint project involving the British Geriatric Society (PD Section) and the Parkinson's Disease Society. The Academy was originally funded by an educational grant from the pharmaceutical company, Pfizer, and has been supported by Boehringer Ingelheim Ltd since 2004.

Parkinson's Disease Clinic, Edgware Day Hospital, Edgware Community Hospital, Edgware

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 Parkinson’s / Mental Health Service, Oxleas Trust, London

This is a joint initiative between the neurology department of the Queen Elizabeth Hospital and the community mental health team for older people at the Memorial Hospital.

It has established a holistic seamless service for patients with Parkinson’s disease which can address both their physical problems and related mental health problems.

Preston Neuromuscular Service, Royal Preston Hospital

The Neuromuscular team offers diagnostic and treatment services to patients with neuromuscular conditions including neuropathies, myopathies and neuromuscular junction disorders (myasthenia gravis). Each patient has different treatment requirements and the team ensures through the use of objective outcome measures that patients are given the right treatment regimen, including withdrawal of treatment in those patients who do not respond.

The team is willing to share their protocols for the administration of IVIG which have reduced treatment complications, and the use of standardised outcome measures to inform decisions on treatment.

Regional Intrathecal Baclofen Therapy (ITB) Service, West Midlands Rehabilitation Service

ITB service interdisciplinary includes a clinical nurse specialist (CNS) with an  extended role. The CNS role has been expanded not just to provide patient assessment, education, dose titration, and pump refills but also team leadership. The service is willing to share its ITB care pathway and protocol.

Sex and Relationships Clinic (SARC), Newcastle

The clinic aims to enable people with neurological problems and / or their partners to access help for sex and / or relationship difficulties. It combines expertise in sexual and relationship problems with expertise in neurological disability. The service offers a Nurse-led Erectile Dysfunction (ED) Clinic, psychosexual counselling, and relationship counselling Protocols have been developed for the use of drugs within the ED clinic; patient group directions are followed by the Clinical Nurse Specialist; a nursing document for assessment has been developed.

Southwark Primary Care Trust, Multiple Sclerosis Nursing Service

The Multiple Sclerosis (MS) Nursing Service at Southwark Primary Care Trust provides support, information and advice to people living with MS. The service supports people with MS from diagnosis through to end of life. Individuals are seen in their own homes, in the outpatient department, and in community clinics.

The Spasticity Service, The National Hospital for Neurology & Neurosurgery, London

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.

Specialist Clinics, West Midlands Rehabilitation Centre

The West Midlands Rehabilitation Centre (WMRC) provides a range of specialist rehabilitation services to the West Midlands. In 2002 a number of problems were identified including inequity of waiting times between Consultant lists, multiple visits to complete comprehensive assessments, minimal team work, poor access to some professionals, and difficulties with internal/external pathways of care. A project was set up to address these problems; it was decided to replace the existing predominately uni-disciplinary medically focused general clinics, with eight inter-disciplinary specialist assessment clinics. The Specialist Clinics now provide a comprehensive assessment of individuals' needs, and deliver specialist rehabilitation services working in partnership with local services.

Stroke Services, Worcester Royal Hospital

The stroke bed-scheme is led by a Stroke Specialist Nurse who coordinates in-patient care for medically stable stroke patients who require a high level of nursing and therapeutic input from the multi-professional team. A weekly Relatives Clinic is held which gives the stroke team detailed key information, often from the onset of the stroke, on which to base discharge plans and to inform other decisions. It is a forum for sharing information on patients’ progress and signposting relatives to support networks and services.

Young Onset Dementia Service, Hammersmith and Fulham, London

The Young Onset Dementia Service aims to improve the care received by people in Hammersmith and Fulham who are under 65 years of age and are suspected of having dementia. They serve approximately 50 people.

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How the examples were chosen and evaluated, and how to submit an example.

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