In Bristol, I am fortunate to work closely with the Parkinson's Advisor, Kevin Carter. For me as a Parkinson's nurse, it is very easy to refer patients on to Kevin for support and information and to accept referrals from him. The patients have a number of opportunites to meet him, either through a one-to-one appointment, at one of the community drop-ins with myself or one of the other Parkinson's Nurses, or at his drop-in at the Bristol Brain Centre.
I just wanted to relay to you that I have been receiving some very good feedback on the work of [Kevin Carter] from my patients and they are have commenting that they really value his input and support.
Kay Baggley, Retired Parkinson's Nurse Specialist, South Inner City & East Bristol
I am a volunteer educator for Parkinson's UK. Prior to my retirement I was a Parkinson’s research nurse and also the first Parkinson's Nurse Specialist in Bath. When Kevin was appointed to cover Bath and North East Somerset and Bristol my professional life changed as he undertook the minutiae of sorting out benefits etc. He was a star and all the patients spoke highly of him.
Retired Parkinson's Nurse
Kevin has been unbelievably helpful through-out the ten years that he has helped, and guided me through living with Parkinson’s. His knowledge on all aspects of the condition is incredible. I can honestly say that without his expertise, professionalism and compassion, I may well not be here today. I am proud that I feel that I can call him a friend.
I would like to say how much I appreciated the help and support Kevin Carter has given us, especially in filling in the Blue Badge and the Attendance Allowance forms. These firms are difficult and stressful to complete. Parkinson's is a difficult disease and it is stressful and depressing to put down in black and white your gradual and inevitable decline.
On Monday Kevin spent over two and a half hours walking me though the Attendance Allowance form. Kevin took infinite care, time and patience in filling in the complicated form. His attention to detail and way of putting me at ease made the process much easier than I had expected. Everything and its relevance was clearly and gently explained and the best written response found and put down.
I expected to come out emotionally drained and very sad I left feeling very positive and that I had found a friend who would always be there to help me. Kevin has a genuine warmth I count myself lucky to have found him.
After my initial diagnosis, I felt devastated and cut off from any likelihood of continuing support. I could see that I would be lucky to see the doctor or nurse much more than once a year for each. I did not feel a part of any community to which I could turn to on an ad hoc basis. Then I was fortunate enough to attend a Newly Diagnosed Parkinson's clinic at St Martins.
I don't know if Kevin had organised this - but he was certainly the most hopeful and helpful - and approachable; answering the questions which occurred to me at that time. Since then, I have attended a number of the Face2Face Parkinson's events discussing and just chatting with other patients, Kevin and just nattering together. Talking and sharing medical experiences and finding out about some of the other resources available which are relevant to living with Parkinson's: Blue Badges, DWP allowances, chiropractor services, Care and Repair services for household repairs and developments etc.
My experience is that on-line, Zoom, Teams etc are not good media for enabling people who do not know each other well to really communicate with each other - that experience relates to my days before Parkinson's. It is even more relevant and important, now that I have Parkinson's, that I can communicate in a manner whichfeels appropriate and comfortable to me. Meeting others face2face is a brilliant opportunity for me!
I have been a Parkinson's member for 21 years. I was a carer for my wife who passed away 6 years ago. I stayed with Parkinson's Uk serving on the committee & co-ordinator. Most of these years I have known Kevin & seen his work with the members. As soon as I heard Kevin had started the Face 2 Face group, I knew it was worth looking at.
If you have Parkinson's or care for someone who has Parkinson's it is worth looking at what they can offer. You may wonder where you can get help with everything in lockdown. Well, you could not do better than contact Kevin at Face 2 Face. I wish you all the very best.
I first met Kevin some 7 or 8 years ago at one of the Branch meetings. I found out later he did this voluntarily. He has always been friendly and approachable. When I was applying for the PIP, he came to our house to help me fill this in. It seemed a daunting process. He visited over 2 days. I know I could not have filled in what turned out to be a successful application without his help. If you are thinking of contacting Kevin, don't hesitate. He has huge experience and knowledge of what is available and appropriate for people with Parkinson’s. We also found we have a love of gardening, what more can I say!
I live with Parkinson’s, and I was lucky enough to have Kevin help me fill out my PIP form at what was a very stressful time in my life. He was extremely helpful, supportive and compassionate not only in helping me fill out my PIP form, but also in providing me with ideas on how to set up my practice as a nutritional therapist. I realised that I didn’t have to face PD alone. I have attended a few events which I found very informative, and it was great to meet so many other people living with the condition. I admire Kevin’s passion and enthusiasm for creating a non-medical centre of excellence for people with PD, where they feel fully supported. Thank you Kevin and colleagues for providing this much needed service.’
I have known Kevin for nearly 10 years, since my diagnosis in 2012. He was very visible in the Brain Centre, having a room next to Reception. Parkinson's patients could make an appointment with him for help with specific needs. For those still in work or of working age, he would tell them what their employment rights were and what extra financial help they were entitled to. For we older PWPs, Kevin knew which benefits were available to us. He would have the paperwork in his room to show us or he would advise us which parts of the forms often caused PWPs problems. He also "fielded" distraught patients who had just received an unexpected diagnosis. Often disorientated, confused and tearful, they would find his door always open. His knowledge, support and reassurance were very much appreciated. Since working as an independent adviser, he has continued to stand up for the need for face-to-face contact with his clients, (as a survey of PWPs showed was preferred) rejecting the telephone advice model offered by other providers. Being less visible does not mean he is less effective. Contact him. You won't be disappointed.
Kevin is a real star! His knowledge and experience allow him to help one to cope with PD in many ways. For me, this has ranged from encouraging me, in my early days with PD, to join a Nordic Walking Class (which led to meeting others with PD who are now important friends), to more recently, giving much essential help in obtaining my Blue Badge and disabled parking space.
A chance conversation led me to you to enquire about benefits and in particular the Attendance Allowance for people with Parkinson’s. Having run my own business, I know how complicated these procedures can be but I was not prepared for the range and depth of the questions on the Attendance Allowance form.
You kindly offered to go through it with me to ensure that I was eligible for this benefit and to further ensure that I received the correct allowance for my circumstances. Without your expert advice I am sure that neither objective would have been achieved. As a result of your guidance, we have been accepted as eligible for the Attendance Allowance at an appropriate rate. This will allow us to cope more easily with some of the problems that living with Parkinson’s gives us and we are very grateful to you for your part in this success story.
It is very useful for those living with Parkinson’s to know that as well as the Parkinson’s nurses there is someone in our region who can assist with the many non-medical aspects of living with Parkinson’s. Keep up the good work! Thanks once again.