People who have been given a diagnosis of MS need access to evidence-based information, writes Karalyn Huxhagen
World MS Day is 30th May 2018. The MS Australia website, www.msaustralia.org.au, has information about activities for Research-#BringingUsCloser day.
From MSIF’s website:
Research is bringing us closer to ending MS. To succeed, we need to work together as a global MS community to find ways to improve life with MS now and end MS forever.”
The #bringinguscloser campaign is about connecting people affected by MS with those involved in MS research, including scientists, students, nurses, fundraisers, volunteers, and more. It’s a chance to come together to celebrate what we’ve achieved in MS research so far, and share our hopes for the future.
On the World MSDAY website you will discover a toolkit of free resources to assist the pharmacy to participate in World MS Day.
Having a diagnosis of MS can be a very frightening and devastating moment for both the patient and their family and loved ones. In this era of social media communication it is important to direct patients to seek advice from health professionals as well as websites that are controlled and moderated by organisations such as MS Australia.
The scaremongering and quackery that occurs on platforms such as Facebook can cause damage as well as delaying patients from starting on treatments that can moderate the progression of their disease.
MS Australia acts as a national voice for people with MS working collaboratively with state based support groups. The website helps patients and their loved ones stay connected with latest research, connect with organisations involved in research programs.
It also has a blog site where patients can share their journey. Some of these blogs give insight into how long it can take to define the diagnosis and commence on treatment programs.
The role of pharmacy is not only to supply the medication but to provide counselling on how to manage the side effects and adverse reactions that can occur. The pharmacy should be aware of local support groups and may provide education events to the support group members.
When I first became very unwell, the GP searched for answers to match my symptoms and MS was one possibility. While my symptoms matched, the neurologist was certain that I did not have MS but he could not give me clarity as to what was happening to me and what my prognosis was.
It is a frightening journey visiting many ‘ologists’ to find an explanation for your symptoms. While on this journey I visited many support groups in my area as I was already working with pain patients and there were many overlaps.
I visited the MS group, the Rheumatoid group and the Fibromyalgia group but it was an education event by a geriatrician that enabled my GP and I to define my diagnosis which joyously was not MS. Luckily for me my GP was sitting beside me at this event and we both had the same light bulb moment as the geriatrician described the neurotransmitter degradation that can occur in the lower spine post insult by surgery, viruses or trauma. I had an explanation and then started on my journey of management of my health.
Tim Ferguson, one of my beloved comedians and songsters from the Doug Anthony All Stars, has lived with MS since he was 19 years old. He is an ambassador for MS and shares his stories of managing his career and his family life with this progressive debilitating disease.
All of the advocates who deliver their stories about how to cope with the disease have the same message: ‘Be proactive and flexible but listen to your body.’
It is important to rest, stay cool and hydrated, do not overdo it but don’t sit and sweat the small stuff. The messages are very much the same whether you are living with MS, chronic pain or any of the other demyelinating diseases. The patient needs to learn what their limitations are and work with these restrictions to develop a life that they can be as healthy and functional within.
I function really well most days but I know when to stop, rest and rebuild or else I become a person with brain fog, fatigue, weakness and pain of varying intensity and location.
As a pharmacist I talk to these patients about ‘boom and bust cycles’, the need for good nutrition and rest, workplace adaption and the need to try the new medicine without listening to the wise ones on Facebook, bowls club or the workplace. The mount of demythisising we undertake at times surpasses the amount of positive counselling we undertake.
There are simple things pharmacy can do to support these patients e.g. making aisles wide enough for wheelchairs and scooters, having a lower bench were they can park easily to sign prescriptions and be counselled, be proactive in stocking the more unusual items e.g. catheters and urinary bags, leg supports and braces. The pharmacist needs to keep abreast of the new treatments and the studies that are progressing to try and find a cure.
If you really want to be proactive attend the support group meetings and discover what the patients want from their health providers. Often it is the little things such as being easily able to purchase splints and daily living aids, where to go for repairs to their scooters and electric wheel chairs.
There have been many new medications come to market. Ocrevus (Ocrelizumab) came to the PBS on 1st February 2018 while Zinbryta (daclizumab) was withdrawn from sale on the 15th March 2018. There have been reports of inflammatory brain disorders in Europe and while no Australian patients have experienced these symptoms the medication has been withdrawn from the market.
Every new medication will come with a time frame and a population that it was tested upon and once to market the post market pharmacovigilance begins. I encourage all pharmacists to report the adverse reactions and issues that patients experience with the new medications. It is only with patient and prescriber feedback that knowledge is gained in the pharmacovigilance space.
Multiple Sclerosis is a lifetime disease with variances of how it progresses and which parts of the body are affected. Patients will live with this disease for their life time and support from the whole pharmacy team can make their lives much easier.
With good support and knowledge you will gain a patient for life and with a bit more effort you may gain their friends who also have this chronic disease.
Karalyn Huxhagen is a community pharmacist and was 2010 Pharmaceutical Society of Australia Pharmacist of the Year. She has been named winner of the 2015 PSA Award for Quality Use of Medicines in Pain Management and is group facilitator of the Mackay Pain Support Group.