My First interview! Thank you so much to the MS Trust UK and Thank you Claire for this opportunity
This part of the interview is a look at the MS Trust
When was the MS trust founded?
We were founded in 1993 by two people who were frustrated by the lack of information and poor NHS services for people with MS. Back then, a diagnosis of MS meant being left to get on with it. Now there are many more options for treatment, and a network of Specialist MS Nurses. We believe that it is possible to live well with MS, and we want to empower people with MS to do that.
Does the MS trust carry out Research?
No. We used to, but we don’t have the funds for research. We decided to focus on supporting people living with MS today instead, and so invest our resources into training, recruiting and supporting Specialist MS Nurses, and helping to get more of them into areas with the greatest need.
What is the ultimate goal for the MS trust moving forward?
We think everyone with MS should have access to a specialist multi-disciplinary health team, and be supported to make shared decisions in their own care. There should be equal access to symptomatic and disease-modifying treatments across the UK, and that everyone with MS should be able to live a full and healthy life.
How is the MS trust funded ?
Originally, we were funded purely by the sale of Christmas cards! Now we have a dedicated fundraising team who reach out to individuals, charitable trusts and other organisations to help raise money. Pharmaceutical companies support some of our projects, but are not able to influence what we decide to do.
How can people support the MS trust?
Our lovely team will look after you however you want to support us. You can set up a one-off or regular gift, or we can help you arrange a fundraising event, from jumping out of a plane to running a race or holding a garden party.
This part off the interview is a personal interview
What is your name and role with the MS trust?
I am Claire Winchester, and I’m currently heading up the Information and Engagement department. This covers the information in the website, social media and our publications, our Enquiry Service, our research news and our facebook community. We also liaise with the NHS and pharmaceutical companies to give the patient voice in any appraisals for new drugs.
How long have you been with the MS trust?
About 18 months
Does the MS trust get enough funding in your opinion?
We can always use more! We don’t get any government funding at all, and of course the NHS budget is increasingly stretched. With more income, we could get more Specialist Nurses in post, create and send out more free packs of information, and do more to reach people that don’t currently know about us.
Do you or a loved on suffer from MS? What made you want to work for an MS Charity ?
I’ve known a good friend of mine locally had MS for some years. And then at my previous workplace, another friend revealed her diagnosis and that she was seeking a stem cell transplant. When that job ended, I decided to look for a role where I would be making a positive difference to people, and so I followed up an advert for the MS Trust. I couldn’t be happier where I am now. It’s an amazing, dedicated small team, and I think we do a lot of good with our limited resources.
What is the biggest Weapon against MS in your Opinion?
Knowledge is power! If you, as a person with MS, know what your options for treatment are, know how to self-manage your condition in between visits to your health team, and feel well supported in your daily life, you’re going to do better. It’s becoming clear that getting that information and effective treatment early can stave off disability for years.
Do you feel we are close to finding a break through ? In terms off an understanding of MS and how it works? Or finding a cure?
We are so far beyond where we were even 10 years ago, and I think the specialists have a pretty good understanding of what’s going on in MS. However, the devil is in the detail – why does one person’s MS progress faster than another’s? Can we predict which DMDs are going to be best for which person, and can we repair the damage that MS does? To my mind, if we could stop MS and repair the damage, that would be close to a cure. We also need to stop people getting it in the first place, and that could take longer. There’s lots more to learn, and it’s good to see that there are new drugs coming out every year.
do you feel MS patients get enough support after diagnosis In terms off their mental health or do you feel more needs to be done?
Mental health support is pretty poor in the UK – in an ideal world, everyone with a new diagnosis would be offered support for their mental health, but I don’t think that’s happening in many places yet. That could really turn a lot of people’s lives around.
Do you have any tips to help someone struggling with MS ?
Having MS doesn’t stop you being you. Try not to give up things that you love doing, like exercise, hobbies or getting out, even if it means finding new ways to do it. Don’t be shy of asking for specific help from friends and family. In my experience, people like to help, but with MS it’s sometimes hard to know how. We all have to speak up, be flexible and lean on each other in life!