United Lincolnshire Hospitals NHS Trust has a new and innovative multiple sclerosis (MS) service, designed to complement the existing rehabilitation service.
The primary aim is to benefit people with MS by ensuring that they have the choice of local access to high quality services. We hope to improve both the quality of care by providing timely access to appropriate services and also to improve the patient’s healthcare experience and journey by providing a service that is both convenient and responsive to local needs.
Brief introduction to multiple sclerosis
There are approximately 85,000 people in the UK who have MS and the majority of people are diagnosed with the condition between the ages of 20 and 50. It can although, of course, occur in older people and more rarely in children, with an incidence of about 50 new cases a week. Diagnosis often arises at a time when careers and family life are at their most demanding. This may have a major impact on those diagnosed with MS and the people around them.
MS occurs when there is damage to the protective material – or myelin – around the nerves in the central nervous system. When myelin is damaged, messages to the brain and spinal cord are slower, distorted, or do not get through at all, causing the symptoms of MS. MS is unpredictable and symptoms can occur randomly – at any time. MS is not contagious or infectious, it develops. Research is going on all over the world and scientists have made significant progress over recent years into looking at the likely causative factors of MS and there are new treatments available to try and alter the course of the disease. Doctors are optimistic that research will continue to discover more about MS and how it can be treated and managed.
What happens if you think you have MS?
You will be seen by one of our consultant neurologists; Professor Sharrack, Dr Kirjazovas, Dr Solinas, Dr Humberstone at Lincoln. Dr Solinas, Dr Kirjazovas, Dr Singhal or Dr Papathanasiou at Pilgrim and Dr Humberstone at Grantham following a referral from your GP. You should receive your appointment no later than 12-13 weeks after receipt of your GP’s referral.
The consultant neurologist will take a history of symptoms, carry out neurological examination and proceed with other appropriate investigations which may include blood tests, MRI scanning, evoked potentials and lumbar puncture. Should a diagnosis of MS be confirmed you will be given a follow up appointment to discuss the findings, diagnosis and future management.
The consultant will then refer you to the MS nurse specialist Shannon Gaughan. Other potential people involved in your care could be physiotherapists, occupational therapists, continence advisory nurses, speech and language therapists, psychologists, rehabilitation specialists, employment advisory officers.
Our MS nurse specialist will be a point of contact for you and your family. She works closely with the consultant neurologists and has an in depth knowledge of MS, working as an MS nurse specialist since 1995, initially setting up the MS service at Queen’s Medical Centre, Nottingham and the Lincolnshire MS service in 2003. She will provide support and information at the time of diagnosis onwards for you and your family, providing accurate and current information to allow you to make informed choices about how you feel you should manage your MS. She will become central to co-ordinating the kind of care you need when you feel you need it most involving other members of the team and ensuring you are the key partner in your own health care. Our MS nurse aims to provide a reactive as well as proactive, responsive and tailor made service to best meet your own personal needs.
Our MS coordinator Michelle Moir-Holland is responsible for organising the smooth running of the MS service providing high quality, comprehensive administrative duties, ensuring all MS appointments and treatment programmes run efficiently and are monitored at all times. She manages and coordinates the Department of Health Risk Sharing Scheme and is responsible for arranging the annual review appointments related this. Michelle is also in close contact with the MS nurse specialist and consultant neurologists.
Service developments
The Department of Health Risk Sharing Scheme
We are a prescribing centre for disease modifying therapy. We have been part of a national 10 year study and we recruited over 100 patients who have now completed this study. The aim of the study was to assess the overall benefits of these treatments and is one of the largest and longest cohorts that will have been assessed in this way. More information can be found on any of the MS website links.
Clinical trials in MS
We are currently taking part in several clinical trials and are actively trying to encourage pharmaceutical companies and institutes of higher education to involve Lincolnshire in clinical research. We hope by doing this we can actively participate in research which will ensure we have a better understanding of the disease and allow Lincolnshire patients to participate in local trials rather than having to travel long distances for these opportunities.
Trent Regional Nurse Network Group
This is an opportunity for the Lincoln MS nurses to meet up with other MS nurses in the Trent region and share good practice and ensure that patients within Lincolnshire have excellent evidence based care.
Vision for the future
We are hoping to expand the neurology services within ULHT which will include additional consultant neurologists and specialist nurses within the field of neurology. The aim would be for the patients to be seen more locally reducing the distance that they traditionally have to travel to access these services, helping to improve the quality of care for patients within Lincolnshire.
New and NICE approved therapies in multiple sclerosis:
Tysabri (NICE TA 127)
Since December 2006 we have been prescribing Tysabri (the first in a new class of drugs known as selective adhesion molecule (SAM) inhibitors. It is also the first monoclonal antibody to be licensed for Multiple Sclerosis. Tysabri is used as a single disease modifying therapy for rapidly evolving multiple sclerosis to prevent relapses and delay progression of disability. This treatment was NICE approved in 2005. The prescribing criteria for this treatment is:
People with rapidly evolving severe relapsing remitting multiple sclerosis (RES group), defined as having two or more disabling relapses in one year with evidence of one or more gadolinium/enhancing lesions on brain (MRI) or a significant increase in T2 lesion load compared with previous MRIs.
Fingolimod (NICE TA guidance 254)
Fingolimod is a sphingosine -1- phosphate receptor modulator that prevents the lymphocytes from crossing the blood brain barrier and causing damage to nerve cells in the brain and spinal cord. The patient group for which NICE approval has been given is: adults with high disease activity, despite treatment with beta interferon. These patients may be defined as those who have failed to respond to a full and adequate course (normally at least one year of treatment) of beta interferon. Patients should have had at least one relapse in the previous year, while on therapy, and have at least 9 T2-hyperintensive lesions in the cranial magnetic resonance imaging (MRI) or at least one gadolinium – enhancing lesion. This should be available for the Trust to prescribe towards the end of July 2012.
Tecfidera (Dimethyl Fumarate) NICE TA 320
An oral treatment option for relapsing remitting multiple sclerosis defined as two clinically significant relapses in the past two years.
Aubagio (Teriflunomide) NICE TA 303
An oral treatment option for relapsing remitting multiple sclerosis defined as two clinically significant relapses in the past two years.
Alemtuzumab (Lemtrada) NICE TA 312
An intravenous treatment option for active relapsing remitting multiple sclerosis.
Funding and prescribing criteria’s for all treatments can be found in the NHS England Clinical Commissioning Policy:
Disease modifying therapy for patients with multiple sclerosis (MS)
Reference: NHS ENGLAND/D04/P/b
Association of British Neurologists: revised (2015) guidelines for prescribing disease-modifying treatments in multiple sclerosis.
Charity work : Multiple Sclerosis Charitable Fund
- We launched the MS charitable fund in 2004 with a highly successful inaugural Gala Ball at Branston Hall Hotel, Lincolnshire. The balls have helped to raise awareness of this relatively new and local MS service in Lincolnshire. All proceeds from the ball have been channelled back into client led services e.g. files developed for newly diagnosed patients
- Other events: The cheese and wine evenings held in the Chapter House at Lincoln Cathedral have been a great success as well as the cheese and wine evening held at The Lawn in Lincoln.
- Wincent Kordula successfully walked to the North Pole in order to commemorate the centenary of Sir Ernest Shackleton’s original expedition
- Michael Gaughan organised a successful charity golf Scramble – Ballina Golf Club, County Mayo, Ireland
- Tracey Young carried out a sponsored sky dive
- A member of the neurological alliance completed the Lincoln 10k raising valuable money for the MS fund
- The thrifty shop at RAF Cranwell selected our charity, along with others, and have made charitable donations for three consecutive years
- The Lincoln Golf Club, Torksey have generously chosen our MS fund as the captain’s choice of charity in the past two consecutive years
If you would like any help or would like more information about MS or any of our projects then please contact ms@ulh.nhs.uk.
Contacts
Contact details of MS team in Lincolnshire
Shannon Gaughan, MS nurse specialist, (01522) 572333
Michelle Moir-Holland, MS co-ordinator, (01522) 572248
Lincoln neurology secretaries
Paula Waite/ Emma Shore, (01522) 573084
Sue Shore, (01522) 573960
Rehabilitation team for North and South Lincolnshire
Lynda Hulme, Secretary to Rehabilitation Consultants’ Community Rehabilitation Team, (01522) 573926
Jill Blackett, (01522) 573928
Ashby Ward, Lincoln, (01522) 572380
Community rehab outreach team
Laura Wilmott, neuro physiotherapist, (01522) 573698
Ann Lewis, occupational therapist, (01522) 573698
Emily Holland, community nurse specialist rehab nurse, (01522) 573698
Tracy Howe, community nurse specialist rehab nurse, (01476) 464971
Neuro Psychology Community Rehabilitation, (01522) 512512
Disability Lincs: (01522) 870333
Benefits Advice: 0800 882200
MS Society UK
Tel: 020 84380700
372, Edgeware Rd, London NW2 6ND
http://www.mssociety.org.uk
Local branches
- Boston: (01205) 724550
- Grantham: (01476) 593915
- Lincoln: (01522) 838220
- Louth: (01507) 604104
- Scunthorpe: (01724) 841992
- Skegness: (01754) 820700
Lincoln MS therapy centre
Tel: (01522) 543333
50, Outer Circle Drive, Lincoln, LN2 4JH
MS Trust
Tel: (01462) 476700
Spirella Building, Bridge Road, Letchworth, Herts, SG6 4ET
http://www.mstrust.org.uk