Charity Insights

I have now completed my third week at the MS Trust and I am pleasantly surprised at how much I have learnt in what has been a relatively short amount of time. My literature search has continued and I have covered a wide range of health interventions for people with MS (PwMS). I have looked into quality of life amongst PwMS, specifically looking at how MS can affect people’s careers, movement, and the economic burden it may have.

Many PwMS find that their mobility decreases over time, which may lead to them becoming wheelchair-, or even bed-bound. Such drastic changes in lifestyle can cause a multitude of problems; from pressure sores, contractures (where a muscle becomes permanently shortened), deconditioning, and even muscle atrophy; immobility can affect much more than a person’s ability to get from A to B. I spent some time this week reading about such issues, and searching for any literature that had been produced looking specifically at MS and similar issues.

Reading about how MS can affect people is one thing, but seeing it in person makes it a lot more real and emotive. This week I was able to spend some more time at the local MS Therapy centre, where I spoke with patients facing the same problems I had spent my time researching. Many had mobility and balance problems, and were struggling with the hot temperatures we have been experiencing this summer. I have learnt that such difficulties with heat are not uncommon in MS patients – many patients find their symptoms considerably worse during hot weather – an occurrence known as Uhthoff’s phenomenon. Fortunately the treatment room in the therapy centre is air conditioned, which made the patients feel a lot better. But sadly some were so adversely effected by the heat they were unable to make the journey to the centre.

Currently PwMS are only entitled to six sessions of physiotherapy every two years on the NHS, and many find that this short amount of time isn’t enough to make a positive difference. The local MS therapy centre aims to address this by providing affordable physiotherapy sessions to MS patients from all nearby regions. But not only do the therapists help to treat PwMS, they are now also working with stroke patients. I spent some time on Thursday with these stroke patients, and saw how much help the physiotherapists are able to give.

My supervisor, who is in charge of producing the toolkit I am helping to collect evidence for, is a physiotherapist specialising in working with PwMS. I will be spending some time next week at her clinic in Norwich, which I am really looking forward to.

Picture to come soon…

Read Week 3 at the MS Trust in full

Today marks the end of my second week at the MS Trust. Now that I have settled into my role and got to know everyone I am working with, time is passing me by very quickly. I’m very surprised to see that I have reached the halfway-point of my internship already.

As I wrote in my last entry, the MS Trust is a charity that deals with all aspects of MS – from people with MS, to health professionals working with these individuals. The more time I spend here, the more I appreciate this fact.

This week I have continued with my literature searching, looking at the impacts MS can have on suicide risk, as well as looking at ways to manage patients with MS. Going beyond the drug therapies that some patients may be offered, I have looked into alternative sources of support; from physiotherapy and podiatry, to assisting devices such as Functional Electrical Stimulation (a device which helps patients with foot drop), I have learnt that there are many ways to treat a person with MS. Each person is unique, and no two patients will have the same experience with the condition.

I was also able to visit a local MS Therapy centre twice this week, where I saw first-hand the very things I have spent the past few days reading about. Being able to speak with patients, listen to their experiences, and learn from them (as my supervisor told me: “you will learn more from your patients than you will from your teachers”) is a very enjoyable and valuable experience, one which I am sure will serve me well as I enter the clinical years of my degree in September.

I was surprised to find that many patients felt lost after their diagnosis. They spoke of how their doctors had not given them much guidance of how to deal with the condition – they were very much left to themselves. This emphasised to me the importance of the work the MS Trust does; they produce information booklets for people with MS, one of which is a very concise “Making Sense of MS” booklet, to be given to patients by their doctors when they are newly diagnosed. Before this I began this internship I had no idea that such support outside the walls of the hospital were available to patients. Taking this into account, I provided the therapy centre with several of our booklets, which I hope the patients find useful.

Another enjoyable experience this week was helping with a morning of fundraising and collections. The MS Trust was voted local Sainsbury’s ‘Charity of the Year’, and so I spent my Thursday morning helping with the collections; donning the blue t-shirt, handing out balloons, and most importantly collecting money.

I have also helped with general office administrative work; from packing all the information booklets to be sent off to hospitals, to ‘stickering’ these booklets – putting a sticker on the back which gives the date of the next publication review – I have been kept very busy. So far I have ‘stickered’ over 500 booklets, and they just keep coming!

I’ve enjoyed my second week here, and look forward to visiting the therapy centre again next week, as well as continuing my literature searches.

 

 

 

Read Week 2 at the MS Trust in full

The MS Trust is a wonderful charity whose principal aim is to improve the lives of people living with multiple sclerosis (MS). Not only do they provide information and support to those with MS, but they also aid health professionals working with People with MS (PwMS). They publish newsletters, participate and fund research, as well as educate health professionals. All in all the charity does a huge range of things, far more than I had anticipated when I first heard about them.

As part of this work with health professionals, the MS Trust is working alongside another organisation – ‘Therapists in MS’ (TiMS) – to produce a ‘toolkit’ to be used by allied health professionals involved in the care of people with MS. The purpose of the toolkit is to help health professionals identify and appreciate the wide range of implications MS can have on peoples’ lives, as well as provide information on the best way to manage these patients. This is where I come in.

My role this summer is to help the MS Trust and TiMS produce this toolkit. I have joined the information team, and am responsible for carrying out data collection and literary review. In other words I spend a lot of time on PubMed. I then choose the most relevant studies and pass them on to my supervisor, who is in charge of bringing everything together.

My first couple of days were spent reading up on all aspects of MS, from its pathophysiology to living with and treating the condition. This was made easier by the large number of publications that the MS Trust produce for patients and professionals alike, which all helped to give me a solid understanding of the condition.

I spent the rest of the week carrying out the research tasks – looking into a whole host of different areas. From vocational rehabilitation, linking MS with depression and changes to employment, it has already become clear to me that MS can have such an impact on peoples’ lives. I also spent a lot of time trawling government statistics websites to determine the cost of UTIs and pressure sores to the NHS. Whilst these things may seem unrelated to MS, they are both very important issues, and ones which I’m sure will be included in the toolkit once it has been completed.

For a couple of days next week I will spend time at a local MS physiotherapy centre, where I hope to get a real first-hand insight into the therapies that I have been researching and writing about. So far I am enjoying office life, and look forward to next week.

Read Week 1 at the MS Trust in full