View from a patient: Collaboration matters

Merging work and illness

I’ve worked in health all my life, starting life nurse training in the NHS, then in public health before moving into communications. I enjoyed educating people about health more than I enjoyed the practical side of nursing, which is why I moved into communications. I have spent a number of years working with different organisations to help them collaborate to create better insight and solutions for health. In recent years I have fully experienced the flip side of health as a patient with a chronic and progressive autoimmune condition. Now I am seeing more sides of the health spectrum, I can use my experience to improve the work we do for patients.

Being a patient

I was diagnosed four years ago with primary Sjögren’s (pronounced: SHOW-grins) syndrome which affects an estimated half a million people in the UK. It’s a condition that affects my everyday life not just in terms of the symptoms, but with the medicines I need to take. I used to plan and tick off triathlon training sessions and now I plan and tick off medicine adherence! Sjögren’s is a chronic, progressive autoimmune disease which mainly affects women over the age of 40. It affects the lacrimal (secretory) glands that produce saliva and tears and other secretions in the body develop a form of inflammation that can affect the joints and other areas. As a result, the glands stop working. The effects in primary Sjögren’s can be systemic. Symptoms vary between individuals but include:

  • Dry eyes, mouth, sinuses, skin etc. A feeling like having sand in my eyes. Dry mouth that feels like the Sahara, that makes eating certain foods very difficult. To help prevent future dental problems, I’ve recently cut out a lot of sugar from my diet. Dry sinuses lead to infections lingering – I try to avoid people with colds but commuting into central London is rife with people coughing and sneezing.
  • Joint pain and muscle pain and low-grade fevers. The day after a busy or hectic day, I can feel like I’ve run a marathon (I know, I used to run them!). As with some other Sjogren’s sufferers I have also developed osteoarthritis. To help – and it does sound contrary to what you’d think – exercise really helps to keep me mobile and relatively pain-free. In the past year I’ve been back running and cycling regularly, but shorter distances than I was used to.
  • Fatigue, which can be disabling, coupled with non-restorative sleep. Patients refer to the 13 types of Sjögren’s fatigue.
  • I, like many other sufferers, have neuropathic pain which manifests in the same way I would feel if I had electricity shooting through my fingers and arms.
  • Reynaud’s phenomenon (a circulatory problem which affects half of Sjögren’s sufferers) causes me severe coldness (and pain) in the hands. I try to avoid extremes in temperature and wear lots of layers, scarves and gloves in our air-conditioned office.

That’s quite a list when it’s written down.

An unknown condition

I wonder if you had heard of Sjögren’s before reading this? Not many people have.

The pharmaceutical industry doesn’t seem to know much about it either! There are no approved drugs to treat the root cause of my illness. Instead I have lots pills that help with the negative effects Sjögren’s has on my glands (hydroxychloroquine, which is an antimalarial), anti-inflammatories for arthralgia and muscle pain, pills for neuropathic pain, pills for circulation…and pills to combat the side effects of the pills. Plus there are plenty of potions and lotions to take each day to help mask the symptoms of my condition.

I’ve changed my lifestyle and diet considerably, employing the help of a nutritionist and coach. With each of the ‘professionals’ (aside from my rheumatologist) I’ve educated them on my condition. There is no comprehensive information available for free in the UK on my condition and it isn’t talked about in the media (the US has a very good patient group with lots of information freely available). Information is geared towards the “sick” patient, whereas I am a relatively “healthy” patient. I want information and progress to keep me that way!

Lack of advocacy leaves us bereft

Not being a ‘popular’ condition, there is a consequential low level of research, but as the Sjögren’s Registry points out “Further research is desperately needed in order to gain a better understanding of this condition and to develop more effective treatments”.

Compare the 1,957 active studies listed on ClinicalTrials.gov for Alzheimer’s disease or the 1,458 active studies listed for Epilepsy (both of which have similar patient numbers to Sjögren’s) against the 39 active studies listed (at time of writing) for Sjögren’s. With no real pharmaceutical players in the Sjögren’s market, the patient group doesn’t have sponsors and the registries aren’t giving out many grants. The British Sjögren’s Syndrome Association provides information for UK patients, but to access it each patient must pay an annual fee to register. It isn’t freely available. There is a resulting gap in provision of expert information and discussion, plus a limited story being told to raise the profile and understanding of the condition.

I am the expert of my condition

I bet you’re wondering by this stage in my rambling how this relates to Aurora?

I’ve always been an advocate for the patient, which is one of the reasons I came to work at Aurora. Aurora is setting out how, by collaborating across healthcare industries and between patients and patient groups, healthcare professionals and professional bodies, senior officials and public bodies, we can achieve more for patients. Not only seeking out the patient voice but also collaborating with people and groups who can raise the volume where it is currently set to mute and get the patient voice heard.

From my personal perspective I can see clearly how further collaboration between patients and patient groups, treating clinicians, professional bodies and industry could raise interest in Sjögren’s, increase the number of active studies and improve understanding for Sjögren’s to a level where progress with treatment might be found. If we consult more, we can find more support and awareness and in the process help the 500,000 patients like me in the UK with this condition.

Collaborating for better understanding and action

For our healthcare system to work for healthcare professionals, patients and their families, we need more people to collaborate; to find out information and support, research gaps and work together to fill them. Large corporations can’t know where to start until they know what’s best for patients – their end customer – they need to ask them and the people who treat them.

How can we expect progress to be made if we sit in silos working on our own separate areas of expertise? How can we find out what gaps exist unless we share our knowledge and understanding? I believe it’s the role of the pharma and the medical diagnostic industry to connect different bodies, patient and professional groups, research organisations and patients and families – to support them not just with a test or a pill, but to provide vital information and education about disease too.

Collaboration, sharing and including patients in conversations about their health are key to the advancement of knowledge and increased chances of success in achieving improved patient outcomes. 

For more information contact me at anna.gray@auroracomms.com

Related Blog posts

Patient involvement and engagement

Nothing about patients without patients

When you think of experts in healthcare, do patients spring to mind? At Aurora, we believe that people living with conditions are the most important to consult when developing programmes…

Patient involvement and engagement

Patient Involvement: Is pharma doing enough to involve patients in its work?

Scan the visionary statements of the major pharmaceutical companies and a common theme quickly emerges – pharma wants to do everything it can to improve patient outcomes. This is very…

Patient involvement and engagement

Patient involvement

Have you ever used sites like TripAdvisor, Yelp or Rotten Tomatoes? We’ve all heard the adage ‘the customer’s always right’ and that’s why review sites are successful. In the commercial…

Corporate counsel and implementation

“Be a good listener. Your ears will never get you in trouble.” (Frank Tyger)

This month, Aurora announces a unique collaboration with PIPHealth – a patient research company that give patients a voice in healthcare. The alliance gives Aurora exclusive access to consult PIPHealth’s…

Post a comment

Your email address will not be published. Required fields are marked *

*
*

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Affiliations