Mary Wilson: My War Against MS
I am 54 years old and had a career in the British army as a psychiatric nurse for 20 years. This included 4 Operational tours, one being in charge of the Field Mental Health Team Afghanistan in 2008. After tests in 2004 I was told in the most inhumane way by a doctor who just said "oh yes, you do have MS" and that was it, appointment over.
After crying for a day I decided it was just not happening to me. I was not going to be that person. I started training for 10k races. I also started climbing Munro mountains with my partner. These are the 283 mountains in Scotland above 3000 feet. It took much blood, sweat and tears, plus the termination of many midges along the way over a 10 year period to conquer these mountains. We climbed some of the mountains with ropes and walking for days to wild camp before even starting to climb. When I did my first one, I thought, I will never manage another one, but never say never! I got used to falling over, my fatigue and muscle weakness and the pain. It was all worth it.
I was Medically Discharged from the army in 2012 and I received an email asking if I would be interested in trying out for the Invictus Games. I remember watching people practicing the shot putt and discus and thinking, "I could do that" and started training myself in my dad's back garden. However, the better I got the more flower pots got annihilated! I was selected for the GB Invictus Team and was honoured to be selected as the only female captain for the sport of Field Athletics. I won 4 medals in swimming and 2 in field athletics.
After the Invictus Games I felt like I was in a black hole. I could not let MS beat me and my stubborn defiance gave me a kick of reality and pride. I had a word with myself - do I just want to lie down and give up, or do I want to show what people with MS can do. I took up Lawn Bowls and won silver in the Scottish Disability National Championships.
In 2016 I took up Para badminton. I had played when I had been a child and had really enjoyed it. Little did I know I would be playing for Scotland 4 months later at my first international in Spain. Since then I have visited many countries and medalled in all internationals. I am very proud to say I am a serious contender for the 2020 Paralympics in Tokyo and am No 4 in World Rankings.
Unfortunately, there is no sports funding for para sport and I have had to use my War Pension and Disability Living Allowance to pay for all costs as I am unable to work anymore, but I don't regret it.
What I am trying to say is, never give up on your dreams, no matter how hard it is and no matter how small you may think your dream is. If it is getting up in the morning, putting a sock on, dressing yourself, managing to make a cup of tea or a small walk, then that is fantastic. Those are your Munro mountains. Don't measure your worth by what other more able bodied people can do. As my favourite song goes by Heather Small, "what have you done today to make yourself feel proud"!
The virtual treatment room is now a fully implemented and successful service we offer to clients. The ‘Attend Anywhere’ platform has allowed us to expand our reach beyond the Glasgow and West of Scotland area as we now have clients living in Dunoon and Stornoway.
Virtual clinic is to enable people to access services remotely for a variety of different reasons, if they have no transport and find it difficult to make appointments, if they are housebound, if working and find it difficult to get time off for clinic appointments or if they live in rural areas. Any person with MS can participate or indeed a relative/carer of that person with MS can also take part.
We are currently the biggest user of Attend Anywhere, a web-based platform that helps healthcare providers offer video call access to services, and have been asked to supply demonstrations and provide case studies for a number of organisations.
Mindfulness has proved to be one of our most popular therapies for clients through the virtual clinic. We have received extremely positive feedback from this, and we are looking toward further development because of the response. We are planning to introduce group sessions providing more cost and time effective methods of support.
Revive MS Support first virtual consultation user, Evelyn said:
"Fantastic service. Mhairi has been my MS Nurse throughout my journey and I panicked when she was no longer in that position but after having a video consultation on my smartphone I realised I can retain contact without having to be mobile. Wonderful service. Thank you so much."
We also currently provide access to MS Specialist Nurses, counselling and Speech and Language Therapy. Our staff members are continually becoming more comfortable and better experienced at using this technology. This is very promising for the future as clients from more diverse locations will be able to access Revive MS Support and the wonderful therapies we offer.
The progress we are making with this project is not only benefiting clients from further away but those with busy schedules or who are unable to travel easily to our centre. We feel this is a positive move for the future of our organisation.
Mhairi Coutts | MS Specialist Nurse
Improvement Fund | Improvement Hub (ihub)
NHS Western Isles | Patient Held Record
The nursing staff in NHS Western Isles identified a need for a patient held record, with patient centred forms, that could then be left with the patient in the home. Following a scoping exercise digital pen technology was implemented. This allows for forms to be completed with the patient where the data is then transmitted from the pen, via Bluetooth to a smart phone. A PDF is created and stored within the patient’s electronic record on SCI. Allowing the original document to remain with the patient. This efficiency saving measure negates the need for the nurse to update records at the base following home visits. The new system has been reviewed with evidence that patient facing contact has already increased by over 50% since full implementation.
Currently NHS Western Isles is in the process of implementing a full electronic patient record called eMRec. Phase 1 of this process involves scanning all paper records including hospital, community and AHPs. On completion of Phase 1 a GP extract will be incorporated into the patient record. In eMRec there will be a direct feed from all GP practices in NHS Western Isles which will allow clinicians to view current medications, allergies and alerts, relevant medical history and current medical conditions. Finally the system will allow for diagnosis based ordering of investigations for Labs and Radiology.
Our other pride and joy at the moment is the implementation of Morse. There was a need for a system to support primary care and AHP clinicians that would free them of their administration burden. After examining current systems there was collaboration with the PAS supplier, who had already spoke of an interest in developing a system to support community teams. They collaborated with the community team to ascertain the requirements and core functionalities for a new system to ensure it was fit for purpose.
Morse was identified as a solution and implemented with success. Morse is a mobile platform that allows community staff to access, download and use patient information from the backend systems while working within the community. It will link in with NHS Mail diaries, allow messaging between clinicians and other agencies, give the capability to send and receive SCI Gateway referrals, and a host of other functions that the brilliant development team at Cambric are working on. This system will upload digital forms, eMRec etc and bundle it into a mobile office that allows the teams to download securely each day and really revolutionise community nursing and healthcare.
Teams using Morse are seeing a reduction of roughly one hour per day, per clinician time previously spent on administration tasks. The system is beneficial in terms of safety and directly improves patient care especially delivering care out of hours where the nurse has no prior knowledge of the patient details. The nurse is able to retrieve patient information from the Morse system using an iPad to deliver appropriate care and prevent the patient having to recount their history.
All paper proformas have been digitised by the supplier and are all available within Morse. Data fields can be pre-populated, images can be uploaded and data can be shared quickly and securely. NHS Western Isles Dietetics team are now fully digital on Morse and are reporting a 40% reduction in administration tasks.
Telehealth is a communication system that uses text messages to help patients and their health professional monitor and/or manage their medical condition more closely. The monitoring system is called “Florence”, sometimes referred to as “Flo” for short. Telehealth can be used for many reasons such as: • monitoring the effects of new treatments • monitoring the effects of stopping treatments • to remind or encourage the patient to do something to take care of themselves • identifying flare-ups of the condition to ensure effective treatment can commence promptly • identifying reasons why the condition might not be well controlled.
Florence communicates by text messages to and from a mobile phone. It will work with any mobile phone or network able to send and receive text messages. All texts to and from Florence are free.
Telehealth does not replace all appointments. Patients will still see their health professional when required. The NHS Western Isles Telehealth monitoring service has been funded by a Scottish Government initiative called Technology Enabled Care (TEC) which aims to increase the number of people receiving Telehealth at home. Florence is not an emergency service. If urgent medical assistance is required then patients contact the appropriate service.
The MS Nursing service has utilised this to support and monitor patients requiring pelvic floor exercises and it has been beneficial in sleep monitoring in conjunction with Fitbits. This system has provided data for consultants on the mainland which enabled treatment plans and advice on how to manage sleep issues in people living with MS preventing patient travel.
Due to fact that there are numerous DMT’s which all require individual maintenance regimes “Flo” is able to send reminders to ensure patients attend blood monitoring and attend appointments minimising the risk of complications during treatment. Since the implementation of Florence it has shown that by receiving reminder texts that are tailored to the specific treatment protocols patient compliance was recorded at 100% in 2017-18 compared to 75% the 20016/17.
Moving forward the next progression for “Flo” is the launch a symptom tracking and relapse pathway. This will mean that patients who sign up to this will receive a weekly text that corresponds with the MS relapse pathway.
Experience Labs were developed by The Glasgow School of Art’s Innovation School. They offer a safe and creative environment where researchers, businesses, civic partners and service users can collaborate to find innovative solutions to the health and care challenges facing our society. They are the core element in the Digital Health & Care Institute (DHI), one of the Innovation Centres funded by the Scottish Funding Council.
Experience Labs use a co-design approach and emerging design research methods to engage with partners and participants, who are encouraged to share their own experiences. Real-life practice is often replicated to allow new technology, services, processes and behaviour to be trialled rapidly to gather feedback from end users.
Anne Rowling Regenerative Neurology Clinic
The Anne Rowling Clinic, opened in January 2013, is at the forefront of patient-centred research into presently untreatable conditions such as progressive MS, MND and the Dementias. Our vision is to give every patient an opportunity to participate in a suite of research studies that collectively will provide new knowledge and lead to clinical trials.
Current MS Research in the Anne Rowling Regenerative Neurology Clinic
Microbiome Study - The International collaborative study with University of California, San Francisco looking at the microbiome in the gut in people with MS and their partners/carers. We are looking to recruit 500 participants from Scotland and recently celebrated its 200th participant. A big thank-you to everyone who has taken part. Recruitment remains open for this exciting single visit observational study.
PHQiMS Study - Low mood and depression is known to affect over half of all people with multiple sclerosis (MS) at some point in their illness. This study will investigate whether a short questionnaire that screens for depressive symptoms works as well as identifying depression in people with MS as it does for people without MS. The study is currently recruiting participants from NHS Lothian.
MS Stat2 - Secondary progressive MS simvastatin trial - This new clinical trial will open to recruitment from the beginning of August 2018. This trial looks to investigate the effectiveness of Simvastatin compared to placebo in secondary progressive MS in slowing the progression of disability. Participation will involve 6 monthly visits to the Anne Rowling Clinic over the course of approximately 3 years.
Rowling CARE (Clinical, Audit, Research and Evaluation) - This national research interest registry development has been driven by people living in Scotland with neurological conditions, including MS, and those caring for them. The purpose is to give information about current and future research to enable people to participate in the appropriate studies or simply to learn about current research activity. Rowling CARE is a Scottish registry and therefore a valuable resource for identifying potential research participants (www.rowling-care.org.uk).
FutureMS - FutureMS is a Scotland wide observational study trying to predict at the point of MS diagnosis the long-term outlook or prognosis for the individual. This is the beginning of personalized medicine. In time it will give patients more choice and help them and their doctors in knowing when to take (or not) a given treatment.
FutureMS began recruiting in May 2016 and now sees patients in Aberdeen, Dundee, Edinburgh, Glasgow and Inverness. Patients attend a baseline visit which includes an MRI scan, blood collection (for genomic analysis), clinical examinations and a health and lifestyle questionnaire. Patients return after 1 year for a follow up visit incorporating another scan and questionnaire. As of 30th April 2018, 272 people have been recruited and 84 of those have returned for their second visit completing the study. This project is a national effort with people taking part from 11 health boards at present, table1. FutureMS is progressing well, generating a large amount of data each week. The study will finish recruiting patients in 2019 and attentions will turn to analysing and interrogating the data.
All participants have the opportunity to be followed up long term providing a hugely valuable dataset of disease course. Participation in this study will help inform the care and management for those diagnosed with MS in the future. This will enable more informed decision making for both the clinical team and patient.
Quote from FutureMS participant -
“It’s just nice to feel like you’re helping, almost a comfort thing. It would be great just to have some idea of what I might expect from my MS.”
Barts-MS and Glasgow neurology team, recently teamed up with the Western Isles MS Nurse to host two research days on the islands. The event took place over two days, one day of talks for the healthcare professionals, a second for people affected by MS and a Digesting Science event for the children who attended.
Attending the first day were district nurses, GPs, physios, health visitors and others who care for people with MS in a professional capacity. We wanted to give these professionals more of an insight into specialist care for people with MS, and talks included information on holistic care, self-management and technology in care.
The second day was for families. People with MS attended with their loved ones and heard about the latest research into nutrition and exercise, Vitamin D, available treatments and the future of MS care. The talks were all filmed and are available on the Barts-MS Youtube channel.
Digesting Science is an award-winning set of educational activities aimed at teaching families about the science and impact of MS through a fun and creative approach. Digesting Science events are run over half a day where families can come together and undertake the activities with the assistance of a facilitator or volunteer. This event can offer the healthcare professional an opportunity to meet the family though the activities are designed and kits are available to anyone who would like to run an event. Find out more about facilitating an event at: http://www.digestingscience.co.uk/
Rachel Morrison, MS specialist nurse in NHS Western Isles was awarded the QuDoS in MS award. The programme recognises innovation and excellence in care and service delivery in Multiple Sclerosis.
“Rachel is passionate about her work, using technology to video conference patients from their own homes.”
Rachel has been instrumental in supporting people with MS living in the Western Isles, providing a comprehensive service from initial contact through to diagnostic process and longer-term care for patients and their families. She tailors her care to address the needs of those with MS using personal visits and technology, where practicable. She enables patients to contact rehabilitation consultants via videoconference in their own homes, negating the need for them to fly to Glasgow.
Rachel is committed to delivering excellence to her patients and is extremely knowledgeable about the range of medications available for them as well as potential side effects.
Rachel is involved in planning and organising a range of training opportunities for staff and patients alike. She has trained home carers and student nurses in how best to support complex MS cases and gives talks on MS to local groups. She organises information events throughout the Western Isles aimed at raising awareness of MS. She has led on the implementation of a localised service for both Tysabri and JCV testing, enabling patients to be managed closer to their own homes without leaving the islands.
She goes above and beyond in her determination to provide her patients with the best care possible.
This was taken from Qudos In MS