Improving access to services
Information for MS professionals improving access to services.
Optimal clinical pathway for adults with neurological conditions: rehabilitation
Neurological conditions can leave people with physical, sensory and cognitive impairments. And they’re a leading cause of complex disability. Rehabilitation aims to minimise the loss of function and help to maintain and restore it. Successful rehabilitation means people can continue to live independently for longer.
Rehabilitation has been identified as a priority in the NHS Long Term Plan. There are long delays for patients waiting for transfer to specialist rehabilitation centres. This prevents the efficient use of neurology, neurosurgery and trauma beds.
The majority of community rehabilitation services are uncoordinated and inconsistent. There’s not enough data to help improve services. And there aren’t enough staff to meet patients’ needs.
This pathway sets out what good treatment, care and support looks like. It sets out goals for good care and supports the improvement of services. And enables commissioning of quality services, locally and nationally.
This includes treatment and support for people who may be experiencing the first symptoms of a neurological condition. And it includes people at all stages of living with a neurological condition, including those who have lived with it for a long time.
Optimum clinical pathway: Multiple sclerosis
This pathway was developed by the National Neurological Advisory Group (NNAG) and a working group of MS healthcare professionals. It sets out care and support for patients with MS. It aims to support them from their first appointment with their GP through every step of their journey. And also includes support for positive end of life care.
The pathway recommends the help of a knowledgeable MS administrative coordinator to support patients with:
- relapses
- disease progression
- symptom management
- palliative care
- end of life care
The coordinator should work together with an MS nurse who can help to manage each patient’s care plan.
Keeping care as local as possible is one of the main aims of this pathway. Patients should have access to a specialist MS team and clinic with different HCPs working together throughout their journey. DMTs can be delivered by a network of virtually-linked specialists. These will operate through local services with access to an infusion centre. And IT systems to support safety monitoring.
Continence Care Pathway
We know neurological bladder and bowel dysfunction has a wide-ranging negative impact on the quality of life for people living with MS. Bladder dysfunction affects 1 in 10 at the point of diagnosis and up to 90% within 10 years of being diagnosed. 68% of MS patients will report bowel dysfunction including constipation and faecal incontinence. There are now well established pathways for the optimum care and treatment of bladder and bowel dysfunction for people with MS.
In January 2022, the British Journal of Neuroscience Nursing published an updated consensus document on the management of bladder dysfunction in people with MS. The consensus document was produced by a multidisciplinary panel of clinicians and patients. Alongside this the panel produced a Bladder Pathway that can be followed to deliver the best possible care for people living with MS.
Read the Expert Opinion Consensus Document (PDF, 992 KB)
Use the interactive Bladder Pathway guide (PDF, 1.19 MB)
We recently organised a webinar to bring together a range of expert speakers to share the work that they have been involved with in developing and implementing the MS Continence Care Pathway.
Care and coordination for progressive MS
This report identifies some current approaches to coordinating care for people with progressive MS and not on a DMT, and compares these with the optimum clinical pathway for MS. Commissioned by the MS Society and undertaken by ICF, the case studies highlight elements of best practice, including MDTs and support for self-management, but also some gaps around formal care coordination and use of care plans.
The report looks at ways to improve care coordination for those not on a DMT - who are more likely to be disengaged from services, have a reduced frequency of follow up appointments, and need more joined up care provision between acute and community services.
Exercise and MS – the unsung DMT?
This is a presentation by Nadia Abdo, MS Specialist Practitioner at Brighton General Hospital.
Nadia looks at exercise through the prism of medication. Nadia treats exercise like a DMT – she looks at how it works, potential barriers to uptake and side effects. The talk uses the most recent evidence and gives easy and accessible information to help you support your patients to get active.
Access to Exercise Pathway project
The Access to Exercise Pathway project demonstrated the benefits of exercise for people living with neurological conditions. The project was led by the Neuro Therapy Centre in Saltney, West Cheshire. And this was in partnership with Brio Leisure, the Walton Centre, and Sheffield Hallam University.
Sheffield Hallam University carried out the evaluation of the project. You can read the full evaluation report and watch the Evaluation Conference on the Neuropathy website.
Benefits of the project included significant increases in:
- exercise self-efficacy
- perceived importance of exercise
- life satisfaction at the 12 month re-interview stage
- activity levels each time the participants were assessed.
The Level 4 Exercise for Long Term Neurological Conditions course is part of the project. This was developed to help reassure healthcare staff that leisure services have suitably trained staff. And that the services meet the NICE guidelines, and their patients would be safe.
Explore the Exercise for Long Term Neurological Conditions course on the Wright Foundation’s website
Get Active Toolkit
This toolkit was developed as part of the Access to Exercise Pathway project. It's ideal for a broad range of people. It's particularly relevant for commissioners of health, wellbeing and leisure services and anyone delivering these services.
It explains how the Neuro Therapy Centre developed this project in West Cheshire with many different partners. The toolkit outlines how other services can adopt this approach - including training for exercise professionals, managing referrals and working with leisure services.
Finding neuro-specific trainers, exercise classes or training for professionals
You can find local personal trainers with neuro expertise through the Wright Foundation. They also offer training for healthcare professionals.
Browse the Wright Foundation's website
You can also find certified activity and health practitioners with the Chartered Institute for the Management of Sport and Physical Activity (CIMSPA).
People living with MS can also find information on exercise and MS on our website.
Service improvement forums
Our Service Improvement Programme delivers local forums which bring together health and social care professionals, and people with MS and other neurological conditions, to fully understand local unmet need. The forums support joint action planning to address these needs and improve local services.
Cheshire and Merseyside
In November 2021 we organised two service improvement forums in Cheshire and Merseyside. These focused on 2 key service areas – access to therapies, and communication and information at point of diagnosis. You can read these forum reports, their recommendations, and the detailed discussions below.
Patient engagement forums 2019
There's no system wide consensus between patients and professionals about what a good quality MS service pathway looks like.
To find this out, we ran a series of forums with people with MS around the UK to talk about their experiences and what they thought constituted a good MS service. Our report looks at what people told us and how they'd like their MS services to be provided.