Involvement in Research

Through my involvement in research with AUKCAR I have had the opportunity to meet other people who get involved in research because of a condition they have. Patient and Public Involvement (PPI) in research is slowly appearing in research in a range of different medical conditions. It doesn’t happen enough but it is good to see it! I had the pleasure of meeting Sue when we were both speaking at a PPI course run by the Edinburgh Clinical Research Facility. I asked Sue if she would mind sharing her experience of how she got involved in PPI and how she has found it. Below is her story about how she was diagnosed with multiple sclerosis (MS) and how she got involved in research, and how she has found it. It is great to be able to share someone else experience and from someone other than an asthmatic. I want to extend my thanks to Sue for allowing me to post this blog. This was a talk Sue did back in 2012.

“My life changed on a wet, cold, November day in 1996, when I rushed out to the garden to plant leftover bulbs. The following day I had a numb left foot but dismissed it as being nothing. The numbness continued up my leg, so I thought I had nipped a nerve when planting those stupid bulbs. I worked in Dollar, 37 miles away: it was busy, stressful and I was constantly on the run so did not have time for this stupid injury. I sought out a private physiotherapist hoping she would be able to release this trapped nerve, but when I made contact, she told me to go straight to my GP as she thought I had damaged my spine! I only had a numb leg. After work I headed for my GP in Edinburgh who told me to expect to have spinal surgery that night. He sent me to the Western General where they were waiting for me – seems as ridiculous now as it did then. 10 days later, still in the ward, thoroughly frustrated (so much so that the nurses called me Mrs P!), having had endless tests, the consultant told me I had had a neurological episode – (or clinically isolated syndrome to give it the correct term) which would resolve itself within 3 months. He was right, it did. But it returned 8 months later.

By this time I was working in Edinburgh and when I saw the consultant again in February 1998, he said he was very sorry but it was definitely MS and there was nothing he could do but see me in the clinic annually. He handed me the address of the MS Society and I left, got on the bus back to work and collapsed weeping in the arms of one of the staff! I knew nothing, less than nothing, about Multiple Sclerosis. Apart from breaking the news to my poor husband, the best thing I ever did was to telephone the Society and ask for relevant information to start my education into the disease I was to live with for the rest of my life.

Someone explained the categories that we group MS into and I was diagnosed with late-onset (I was 48), aggressive, relapsing/remitting MS. Within 6 months I could no longer cope with my career and began spending regular periods in hospital being treated with steroids – the only drug available at the time in this country. The relapses began to strengthen and lengthen until I had to spend the middle two weeks of any relapse holed up in my bedroom as I couldn’t use the stairs. Remissions were like gold, sometimes only 3 weeks long. I didn’t need my GP to tell me the outlook was grim, I knew I was getting weaker.

At the end of the 20th century, very little was moving in the MS research field. MS was neither attracting government attention nor recruiting the high standard of researcher required to move forward. Of course, I spent a lot of time reading up on the subject and quickly realised other countries were using new disease modifying drugs, banned in this country due to their cost. I was beginning to build up a head of steam and used my hospital stays to constantly question my consultant and his registrar – eventually they could be seen creeping past my room hoping I wouldn’t bother them again! But it paid dividends because, eventually, the registrar mentioned an old, cheap immunosuppressant drug used for transplant surgery that had displayed good results for MS. They decided, as long as I was willing to accept the risks, I could become a named patient. It was just at this time that that I had a catastrophic relapse and lost the use of my core muscles so could no longer walk. I was taken to hospital by ambulance to be assessed. That was one of the lowest points of my life. I lay in a side ward, unable to do anything, knowing that this was quite probably going to be my future, and my family’s future. It was decided that I should be transferred for rehabilitation to a dedicated rehab hospital and at the same time we all agreed that I should begin on that immunosuppressant.

For me that was a desperate time. It was an awful ward to be in, but thankfully the physiotherapy department was wonderful. A week later, after lots of work on my core muscles, I was tied to a standing frame for the first time and felt so tall, so far off the ground that I couldn’t believe it. Gradually I began the work of learning to walk again using parallel bars with my wheelchair being pushed behind me. It was so very hard to make my left leg move through to the front that I did not think it would ever happen. But it did and I decided that once I could walk enough steps with a zimmer, I could manage the journey from my bedroom to the bathroom so I told them I was going home. The consultant tutted and muttered and said he felt I should stay another week. My response was that on the whole, men found it easier to fall in with my wishes! So he gave in. Once home, I was so lucky to be given daily physio in my bedroom and, a few weeks later, using elbow crutches, I descended the stairs for the first time! What an amazing feeling to see my lounge again.

That little tablet had begun to work and I was aware that the relapses were less frequent and much less severe. Once I was able to get about a bit, with my husband’s help, I became more active within the MS Society. In 2002, an advert “Have your say in research” leapt out of the page of the Society’s newsletter and I immediately applied. I50 of us around the UK were accepted for training for the new Research Network. The Society had made the historic decision to involve people with MS in everything to do with research so that the projects they funded would have more relevance and make better use of scarce resources.   After training we were ready to get to work helping to review grant applications to the Society. Gradually I began to take on other work and through that found a channel for my frustration. Suddenly I was asked to speak to others about the Research Network. I was scared witless but so pleased that I managed it and from that grew a whole new confidence and purpose. The Research Network went from strength to strength and I began to be asked to respond to breaking stories about MS research on television, radio and newspapers! Amazing. I thought my days of using my brain were well behind me but, with the support of the Society in Scotland and London, I was encouraged to take up the many challenges they sent my way. I have continued to speak as a patient rep whenever I’m asked and have become involved with the Scottish Stem Cell Network for whom I have since carried out regular speaking engagements in their outreach programme. I’ve chaired meetings (one of them in the Scottish Parliament), I have worked on panels and on reference groups and am now part of the Steering Group that guides the development of the Research Network. I’ve been privileged to meet with many outstanding MS researchers and have listened when they speak about their amazing work. I’ve even spoken on the same platform as some of them.

Am I the same person who lay in a darkened room in the Western General unable to walk or to see any future? I hope not. I have, through all this fascinating work learned about my own disease from those whose lives are spent working to find new treatments and that in itself has been payment beyond price for the small amount I do. And through these difficult years, my husband and family have been my rock and have continually supported my wish to meet the challenges the MS Society has laid down. Without that amazing support all this would have been just a dream. The Research Network came at just the right time. Those cheap tablets I have been taking since that long spell in hospital, have kept me out of the ward since then and have made my MS less aggressive so that it can be managed. Do I still have bad times? Yes I do – regularly. My MS has moved on to being secondary progressive so that the damage is now permanent and the disease path is downwards. But on the good side, there are less violent ups and downs and the whole thing is calmer. When I look back over a year gone, I can do less physical things than I did last year and of course that will continue. How long I can remain active, using what ability I have left is anybody’s guess but I’ll keep on until it beats me.

MS research has moved on incredibly in this new century to the extent that we are on the cusp of great life-changing results with the use of stem-cells. It is a very exciting time for people with MS, but developing research outcomes so that they can be used in the clinic is a phenomenally expensive process and takes years. The Society supports much of the quality research being carried out in this country but it is of course limited to the amount of funding available.

Last autumn I was interviewed by the Society for one of two lay places on the Board of Management of the MS Translational Research Centre in Edinburgh. I am very proud that I was accepted because I have great faith in the work that is taking place there. I attended my first all day Management Board Meeting last December – two MS Society staff up from London, the other lay member, 6 international professors………..and me! Even though it was a little bit terrifying having to contribute and discuss in such august company, it was an amazing day in an amazing new building. The mind-blowing work that is happening there, in close cooperation with the Cambridge Myelin Centre, left me breathless, and excited for everyone who is suffering MS and for all those yet to be diagnosed. I am therefore in a perfect position to assure you that the results Hazel speaks of are absolutely true. I believe our future is contained in that building behind the Royal Infirmary.

I am now a grandmother of two and naturally I am very concerned that this vile disease will visit one of them. But, because of my experiences, I trust the future will be very different for those little ones if they have to live with this disease. Many years in the future, I think science will look back and note that the biggest break-throughs came from this period of research.

The MS Society staff have been my mentors and are always ready to help if I have problems. Yes, I have tried to make the most of what was on offer but I thank them for presuming I still have something to give when I have constantly doubted myself. Without the MS Society and the Research Network, life for me and my family would be very different. They have quite simply saved my sanity.

(this extract below is taken from a more recent talk Sue did)

In 2014 I was elected to the Scotland MS Council which was a huge sideways step for me, having been immersed in research for so many years.  Here was the actual workings of the charity, the branches and committees, the fundraising and staffing, none of which I had a clue about.  I am still learning and am at present awaiting the outcome of my re-election (it is a 3 yr term of office) which was voted on by the membership.  If I am fortunate enough to have been elected I will serve a further 3 years and hopefully by that time, I might understand what I’m doing!

​I continued my work for the Reserch Network and, as you heard, it was at my annual review that the registrar asked if I would be interested in meeting A who is a Patient and Public Involvement advisor for the CRF.  I was delighted to learn that so much was going on in the wider world and happily agreed.  We met and had our coffee and I was impressed with the work already achieved so, hoping I could be of help, signed up.  A is amazing and very impressive but it  is ridiculous that she is not properly funded – that makes me angry.  I am enjoying the various tasks I am given and it is good to know that my experience can be put to good use in the wider world.

I hope that tells you a little of what my life with MS has contained.  Unfortunately, I continue to go gently down the disease path no matter how much I fight it but I will keep kicking on as long as I possibly can!  I’ve been so lucky to have had the chance to use this vile disease to represent others and to try and educate both researchers and the public about MS.  It is a small charity in comparison to the huge ones like cancer.  100,000 folk have MS in the UK, 11,000 of them in Scotland, making us the MS capital of the world – the worst place to be is Orkney!”

REACH: REgister for Asthma researCH

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Last week I got to attend the launch of REACH a database where people with asthma or people affected by asthma can register and join. Once you have joined REACH you will hear about studies which you may be able to participate in and help asthma research and the development of new treatments for asthma and to help researchers better understand asthma.

Sign up to REACH here!!!

There is a huge shortage of participants for research studies for all conditions but the number of people suffering with asthma is growing but the developments in asthma medication isn’t keeping up with the number of people with asthma but also the number of different phenotypes of asthma which all require different treatment regimes. By having a database specifically for those with asthma or affected by asthma will give researchers a place to find people who are interested in taking part in research and who are applicable to their study.

4-5 years ago I was never really aware of how to get involved in research specifically in clinical trials or being a participant rather than being involved in the research process. I always assumed it was if your Dr was interested in research then they would put you forward for research studies but otherwise I had no real awareness of how to become a participant and I am sure I am not the only one who felt like this. I would be more than willing to be a participant if it was not only going to potentially benefit my own health but the health of others with asthma as well.

The launch party up at the BioQuarter in Edinburgh was great and joined by a number of researchers, PPI volunteers and other members of AUKCAR. The cake to mark the launch of REACH was great too!!!

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If you know someone who may be interested in signing up to REACH please send them the link http://www.aukcar.ac.uk/reach They may also want to get involved in research as a patient and public involvement volunteer with AUKCAR, more information can be found on the AUKCAR website.

When is it time to say enough is enough?

We are talking about medications, and when is it time to stop and think how much are they benefitting me over how much are they causing problems and also dependence on them.

I was really shocked the other day when picking up my prescription, this time as there is not always, there was a repeat prescription list in with my drugs. I was shocked by the 5 full pages of drugs.

I remember back when I first went to boarding school and first had responsibility for requesting my inhalers and montelukast from the Medical Centre, I was on 3 different medications- a reliever, preventer and anti leukotrine agonist. That was it. Perhaps the occasional course of steroids, antibiotics and antihistamines. As my asthma got a bit worse more was added to this list. I can vividly remember the first time collecting my medication and seeing that I had 2 pages of repeat medication and being so disappointed that I needed all these medications for my asthma. Now I would do anything to have that 2 pages (well a page and one medication on the second page).

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Looking through the pages of medications today and trying to see if there are any I can take off the list so I wouldn’t have 5 full pages. The worry is that any more medications are added then it will spill over into 6 pages. I think I would feel better if I could really feel the benefit from everything I am taking but I feel disheartened often when despite all these drugs I still need intervention from hospital to manage any asthma attack I haven rely on intravenous medications to do this. I worry about when the time comes that these medications are not enough. Back when I had less medication I would worry that these drugs would become part of my regular routine as I started needing them more often these were drugs like prednisilone, antibiotics, nebulisers which I am now dependent on. I worry that now will there come a time when I need stronger drugs to keep me stable. I often wonder if I should go back on my syringe driver which at the time I hated but it also meant I wasn’t needing so many drugs and I could get off the steroids. But sadly moving back to Scotland that option was taken away and they are very anti sub cut continuous infusion.

Its scary. I do worry that every one of those 28 items are regular and are used everyday just to keep going and how much are they keeping me going. I can’t work as much as I did, I can’t play the sports I want to. I am kind of thinking what is the benefits and what are the negatives.

I see patients in the hospital and sometimes envious of them because they can function with less medication- which I know everyone has their own set of circumstances and have their own hardships but when seeing it on there surface its hard not to think about what if it was different. I see people all the time and wish for a drug that would help because after all it is only asthma and asthma should not have the grip over people that it does.

Don’t get me wrong I know things could be a lot worse but I guess sometimes things come up and hit you i the face a bit when you are least expecting it, and right now I feel pretty isolated by it as am just feeling my way through it with not a huge amount of support from my team just now which is hard but then i know my options are to increase the steroids and if that doesn’t work to go to hospital.

This is a bit of a moan but its real life and its what I sometimes feel. Maybe one day soon I will either feel the benefits of all the drugs Im taking or there will be some amazing break through a new drug will come out which will relax and open up the airways or they find a cure for asthma (but I think that one is wishful thinking!).

Happy 9th Birthday

Wow!!

I can’t believe my blog is 9 years old later this month. This is the first post I wrote. I started this blog as a means to vent my frustrations and feelings about living my life with difficult to control asthma aka brittle asthma. I started writing it purely for myself, to express how I really felt. I was awful at talking about my feelings and just wouldn’t. I would say I was fine whenever asked how I was, I just didnt want to ever talk about how I really felt. I still do that a lot but I am a little better than I used to be (although I am sure so many people would disagree). I would bottle everything up and rather than speak I would take my frustration out hitting hundreds of golf balls at the driving range, running until I couldn’t run anymore as my lungs would be on fire begging me to stop or I would take my anger out and punch a wall which I would later learn is never a good thing and it does cause long term damage to your hands!

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(photo taken 9 years ago doing a bucket collection for Asthma UK just after I started this blog)

The purpose of my blog is still the same although it has evolved. It is still a means for me to express how difficult it is to live with brittle asthma, the ups and downs, highs and lows, and how it effects my life and those around me. Over time rather than it just being for me my blog has become a learning tool for people in the medical field showing the real life of the condition rather than just what they see, how research has shaped what I do and how others can benefit from research not just from being a participant in a trial but being involved in the research process, and what people with such a difficult illness really want. I have been so lucky with the people who have contributed to my blog over the years sharing their experience of living with asthma from all over the world and all different types of asthma. When I first started it I never thought I would still be writing my blog now. Im sure many of the posts over the years are pretty similar and repetitive but in some ways it shows just how backwards asthma medication is and how there have not been revolutionary changes in asthma medication unless you have very specific phenotypes such as eosinophilic asthma then its great as you can get one of the new “mabs” that are being developed. Neutrophillic or non atopic asthma your not so lucky and just need to keep plodding on with what you have!

Im not sure if this blog will still be going in 9 more years time but I do appreciate everyones comments and the traffic it gets. It is amazing to see how people all over the world read my blog and the number who visit it everyday. So for that I am very thankful.

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DUM SPIRO SPERO

PIP- Step 3

aka Personal Independence Payment (the new DLA).

I previously wrote about my experience of the PIP application process and how I found filling the form in. Post can be found here. Then the second step was the face to face consultation. This post can be found here.

The third and final step of the PIP process is the result which is decided based on the evidence the Department of Work and Pensions (DWP) has collected from your form, the face to face assessment and the various healthcare professionals looking after and managing your conditions.

It was a nervous wait to find out the result. During my face to face assessment the nurse who I saw said she would be recommending that I should be awarded PIP but did say that because she thinks I should be awarded does not mean that I will be awarded anything. It was in the hands of the DWP now and I just had to wait for the letter which would say yes or no.

I didnt know how long it would take for a decision to be made on my application so there was a bit of an anxious wait and coming home from work each day to see if there was post and what post was it. After about 10 days I think it was I came home to find a brown envelope on the floor along with a whole lot of junk mail and take away menus which drive me crazy as end up with so many which I never use!

I really didnt want to open the envelope because there was a fair bit riding on it, incase it was bad news. I did know that if I was not successful I would be able to appeal the decision (I guess it is handy having a Mum who works for the DWP on the appeals tribunal as a judge- she was a little worried as I filled in all the forms myself without her input so she was worried I wouldn’t say exactly how my asthma effects me on a daily basis as I have adapted a fair few things so I can manage and get by ok!

I did finally pluck up the courage to open it. Which is silly to need to do- its not like I was opening exam results or anything.

PIP is awarded in 2 parts. There is the care component which is awarded based on your activities of daily living such as washing, dressing, eating, drinking, managing your medications, reading etc and the second part is mobility which is awarded based on how far you can walk and what aids you need to walk comfortably.

When I started this process out I was doubtful about even being awarded anything but as I have had my hours reduced at work and needing more and more help to do basic things like keeping my flat clean, changing my bed and using the cleaning products it would be very helpful to have PIP to help with extra costs I need to spend because of my health which I would not have to do if my health was ok- or even how it was 5 years ago.

I was able to breathe a sigh of relief when I opened the envelope. I had been awarded both care and mobility components which is fantastic and I am really relived as it will make things a lot easier. I have been awarded it for the maximum time allowed now before you need reassessment which is 5 years. The old scheme of DLA you could be awarded it indefinitely and not need any reassessment but since the switch to PIP they are being more rigorous and stricter with the criteria for being awarded PIP but also the time limit on the award. I think this is because so many conditions are variable and with new treatments being developed for conditions which previously would have not been able to be improved. So I am hopeful my health will improve with new medications and I won’t need PIP long term!

The is the relief at being awarded PIP but at the same time I can’t believe my asthma has had such a detrimental effect on my health that I need to be applying and being awarded PIP. It frustrates me that a condition like asthma can be so devastating that it has led to this.

The whole process has actually not been to bad. The horror stories you read in the newspaper and on TV have been polar opposites to the experience I have had during the process of applying for PIP.

My main piece of advice to anyone applying or thinking of applying for PIP is being honest about what you can and can’t do as they will find out if you try to make your condition look worse than it is, and also the evidence you get from your medical team will not support what you have said. They did comment in the report that what I wrote matched what they saw in my assessment which matched the various letters the received from the different members of medical professionals who manage my care and condition.

Feel free to ask any questions if you need help or advice about PIP and what to do.

Hobbies and down time!

What do you do when you can’t do what you want to do and how do you find things to do that you want to do and can do? This is an issue I have encountered a few times but have found the balance I think.

With not working so much I have more down time now. Over the years of having extended periods of time where I have not been able to do things I have been at the two extremes. I have gone from the extreme feeling of not being able to do stuff is not going to stop me so I am going to do what I want to anyway and would think sod the results. I found that as I wasn’t doing as much, such as University I had even more down time and ended up actually trying and attempting to do more things than I would have had I been living what I considered a “normal” life.

But with that extreme there is the other end which I have also had. I went through a phase where I sort of thought what was the point in attempting to do anything because it would make me ill and set my breathing off, and I couldn’t do what I wanted to do how I wanted to do it. Writing it here makes me sound a bit like a petulant child not doing something because I can’t do it my way, but I don’t mean to be. I think it is so hard because brittle asthma is one of these annoying diseases that when you don’t do anything you feel not to bad but then you go to do a hobby or activity and you can’t because your airways are so tight and constrict. It is frustrating especially when you were a very active person. Going through this sort of feeling made me feel very depressed which just adds another thing into the mixing bowl to make you feel worse because depression just makes you feel like not bothering, so you isolate yourself more to stop you being confronted with activities and hobbies you can’t do. Admitting this is ok. You are not weak to say that a condition effects your mental health. Living with any long term condition can effect your mental health. You live on a knife edge with not knowing what you are going to have or feel the next day or hours.

I remember a conversation I had with my Mum when she was asking if I had any interests outside of sport because she was concerned that I had a bit of an all or nothing attitude. At this point I wasn’t involved in any of the research things, coaching, lacrosse stick stringing and dying, assistant manager in lacrosse so was only focused on running the 1/2 Marathon, playing lacrosse and playing golf which my rational brain knew I couldn’t keep up with but the impulsive side of my brain really doesn’t care what my body thinks but I love sport so Im going to do it. I guess though you learn by your mistakes and although I spent many years persisting to play sport and eventually running the Edinburgh 1/2 Marathon I started to accept that my body was at its limit but wasn’t quite ready to give up on sport just yet. I had very little interest in much outside of sport. I think Mum suggested cooking classes or yoga to which I sort of laughed as a daft idea and not something I wanted to do. I had done yoga once and found it boring and despite my sporting background it highlighted how utterly inflexible I am and how I am not good at relaxing or focusing on my inner karma.

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But having said that, 4 years on and only really in the last 6-9 months I have become content with not playing sport. I am not sure if it is because there is so much more at stake now if I continued to play sport. When I say so much at stake I don’t mean losing my job but the potential for losing my life from an asthma attack. I am all to aware that there are only so many times you can come out of intensive care walking and talking. It sounds extreme but its true. It has happened to friends and I don’t want it to happen to me. I have had attacks recently which have sent me to ITU and I wasn’t doing anything like playing sport.

I have been fortunate that I have had opportunities come to me which have meant I am not sitting at home thinking about what I can’t do and what I used to do. I do have the days where I do think that but because of other activities now I am able to distract myself away from the can’t and focus on the can and able. I often find myself now with a much wider variety of activities which I enjoy and participate in than I ever did when I was only focused on sport.

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I think what I am trying to say is that if you find you are experiencing time when you can’t do what you would like to do, or you have been forced to change your direction then other things will come by and grab them. There will always be down times in life. No one wether the have a long term condition or not can end up in situations which cause crisis and result in depression but it is acknowledging how you feel and responding to that in the right way.

There are many days when I really can’t be bothered to do anything as just don’t see the point but these times are more short lived as there is always an email to read, a lay summary to review, a course to teach, a teleconference to prep for or take part in. I have so much to do now and it is a wide range of things. Some I can even do when in hospital and in that horrible stage of being fine sitting on my bed but getting up to go to the bathroom results in multiple back to back nebs, but having things I can do as distraction is a life saver.

I am amazed at the variety and number of things I now do: one of the PPI Leads at AUKCAR, author, assistant manager for Scotland Lacrosse Women’s Team, Member of RaP at AUK, part of the PAG at AUKMRC, Astra Zeneca Patient Centricity member, speaker for PPI course with Edinburgh CRF, speaker for PPI Module in Clinical Trials Masters at Edinburgh University, custom lacrosse stick stringer and dyer, PAG member for ELF, blogger, volunteer, and anything else that may come my way. I am so thankful for the opportunities I have been given as they really have turned things around when I had to give up playing sport. I am not sure what I would have done had I not had things to fill my time! Probably still intent on attempting to play sport and not doing my body any good at all!!!

 

PIP- Step 2

aka Personal Independence Payment (the new DLA).

I previously wrote about my experience of the PIP application process and how I found filling the form in. Post can be found here.

Step 2 is the face to face assessment.

I was not looking forward to this. Recently, there once again have been horror stories in the press about how awful these assessments are, how they are in buildings that are not disabled friendly and stories where people reported having to crawl on theirs hands and knees to get up the front steps to the building because they would not put out an access ramp as the person was not in a wheelchair. With seeing all this I really was wondering what was I going to be faced with.

The face to face assessment is carried out by a company who work on behalf of the Department of Work and Pensions (DWP) and were formerly ATOS but not anymore. My appointment was 9am so would be over and done with so I could enjoy the rest of the day rather than wait, wonder and scare myself silly wondering what to expect.

Arriving early my heart sank. To get from the car to the door and into the building there was a rather small but very dangerous obstacle. The group of people smoking right at the door (some may say this is a good thing as the person doing the assessment would see just how unstable my lungs are because I would get wheezy being exposed to all the smoke!). To be honest I didnt care if I was seen wheezy or not- but a quick dash and holding my breath I got in the door relatively unharmed.

You are all sat in a waiting room together as there are several assessors so multiple people can be seen at once. I was the only one who turned up alone, but you could’ve family members with you or a rep to act on your behalf I assume and ensure that the assessor receives all the information about you.

Anyway hearing my name called and a walk down what seemed like the longest corridor I entered the room and introduced to the assessor. A nurse assessed me who it turns out used to work on the ward next to the ward I used to work on.

The assessment was not what I was expecting at all. I thought I was going to need to justify everything I had written in my forms but it wasn’t like that. The nurse used the form as a general guide to structure the assessment but we spoke about the various areas and aspects of daily living where I explained the difficulties and adaptations I had made to be able to achieve the different tasks. She didnt ask me to replicate any of them or show her how I do certain things. The only thing she did ask me to do was to do my peak flow. She handed me the peak flow but I gave it straight back to her and got my own one out. Why did I do that? The peak flow she gave me was so old it had the old scale on it rather then the new EU scale which we use in the UK so the values would be different. I guess with that she knew I knew my condition well. She was also intrigued by my portable nebuliser. I don’t know if she asked to see it to really check it is something I always carry or it was her curiosity at seeing one. By the end of the assessment she said she was going to recommend that I am awarded PIP and would hear in about a week or two.

What would my advice be to people who may have an assessment coming up?

I would say just be yourself. They are not setting out to trick you, or test you but to understand better how your condition effects you and in what ways. It was good to explain certain aspects like the issues i have with eating because of allergies and there was not really a section in the form where I could write about that. She could also see how bad my shakes are which is very difficult to write down in a form how it appears and impacts on what I do.

I found that being there meant I could explain more about different aspects which perhaps I had not explained in the form because space did not allow or there was not a section for it. In the waiting room at the start I overheard people saying to each other how they need to lay it on thick so the assessor sees things and sees how they can’t do something because they are so unwell. I felt conflicted by this because I am sure whatever condition they have is hard to live with but they shouldn’t be making it seem worse than it is just to get more money if their condition is not as bad.

Having had the assessment I felt that what I spoke about to the nurse reflected what I had written in the form and what my Dr’s and nurses had written in their letters to. Being honest is my main thing because there is no point on lying about it as either you will trip yourself up or your medical letters will not be saying the same thing. If everything is coming from the same hymn sheet then all will be ok.

The horror stories you hear I do think are just that horror stories as my experience has been far from what I have read or heard in the press. It really was not stressful at all and I felt they made the whole process very easy and straight forward.

They say it takes a week or two to hear back but another post will follow about the award and what it all means!