As a person living with ataxia, what three improvements to your care would make a positive difference to your quality of life?

Ataxia UK is a member of an organisation called National Voices, a national coalition of health and social care charities in England. All the charities work together to strengthen the voice of patients, service users, carers, their families and the voluntary organisations that work for them.

In October National Voices will participate in something called the 'Future of Health' Conference. This is aimed at health professionals and aims to create a new way of working across health, social care and the third sector; taking an holistic, person-centred approach, delivering parity for mental and physical health and reducing inequalities.

National Voices are involved to promote patient voice in the conference.

In preparation for the conference, it would be exceedingly helpful to National Voices if you could answer the above question 'As a person living with ataxia/a long term condition, what three improvements to your care would make a positive difference to your quality of life' so that they can represent our views as accurately as possible.

Thank you for your help.

Best Wishes


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17 Replies

  • The right psychiactric intervention to help with a progressive disease.Stuck in a bereavement cycle-loss of skills.

    Continual and no end.

  • I've pondered over this Harriet. At the moment I don't receive any specific care.

    There are no plans for me to see a Neurologist again, unless I deteriorate.

    I can sense there are changes, but how drastic does it have to be before I should

    ask to be seen? This is only a comment, I'm certainly not asking for intervention.

    Personally, I found the very best thing I did was to take steps to overcome depression.

    It's helped me move forward and given me confidence to tackle things that I never

    would have before. xB

  • Being part of this commune goes a long way to keeping me sane.

  • 1. What to door expect 2. A central address for questions 3. A consice list of medication or tests that may help.

  • I've read a lot about the dreaded PIP interviews. Perhaps something could be done to

    alleviate the stress caused by these.

    Do people get enough financial help/practical advice when requiring wheelchairs etc?

  • When I receiveved my letter from ATOS Newcastle toattend for a medical, trying to arrange transport through ATOS was disgusting.

    They simply were not interested and insisted that my Dr/Professor provide proof of my medical condition. Something they were reluctant to do - Dr patient thingy...

    Anyway, mine was cancelled.

    But NOT through any help from ATOS.

  • Hi Harry,

    Been giving this a lot of thought before replying.

    'As a person living with ataxia, what three improvements to your care would make a positive difference to your quality of life?'

    Firstly, and thinking more widely here, my top suggestion would be getting a fast and accurate diagnosis, based on the patient being understood and believed. It strikes me that so many folk are having real issues about these, and these affect their quality of life

    because they have no other ways of helping themselves and are totally reliant on their doctors and consultants to provide this. The spiral downwards for many will start when they have these experiences. I've had excellent care, but I know so many where this has not been the case.

    Secondly, I'd say that an ataxic patient needs to be given support in a wide range of ways. There are no one size fits all solutions, and it needs to be based around individual needs- not easy to meet, but to be effective, the long term view needs to be developed by the wider medical profession, aware that as the thing progresses, there will be a network of support available and known to patients ie a Game plan for them.

    Thirdly, I'd say that getting the opportunity to network with others with ataxia is vital.

    This is a condition that is isolating for many. Face to face is great if you can do this, but for many is has to be in an e-environment as here, or through other routes. The support such forums and groups give are so important. They can be life changing. They can be not just a link to a support network, but THE link to it. Others there can inspire, motivate and challenge us, so these virtual networks become really valued to patients on their journey with ataxia. They need to be built into the thinking about patient support and patient voice so that they are not seen as 'bolt on' but seamless to the wider planning for patient care. 'Partnering' and empowering patients are perhaps what these points are about.

    Good luck with taking our thoughts on to the powers that be. I hope we can help you with this.

  • I think the fear/ worry/ anxiety/ of having Ataxia and not really

    knowing what the word 'progressive' means is possibly the main care we all need I am a

    fairly positive person if I know what to do and to expect but there are so many unknowns

  • Massage therapy has been shown to have made improvement to balance

    in Cerebellar Ataxia patients.

    Neither my GP or Neurophysiotherapist were able to refer me anywhere for this.

    Both said if I had MS it would be a different story.

    Cerebellar Ataxia and MS are progressive degenerative neurological conditions,

    there should be no discrimination when it comes to treatment.

  • I am very lucky and can afford to pay for services that really help me to stay sane (well as sane as I ever was!). Having access to some of them would be helpful to others, I am sure.

    I think physical activity is very important. Staying as active for as you can for as long as you can. I have a remedial therapist 3 times a week. He tries to keep my body as strong as possible. He ends each session with stretches and a massage to my upper body. I also go ballroom dancing nearly every week. So weird because I have to use a frame for walking, but I can dance quite well, with Ian's help just to guide me. I see my neuro-physio every 8 weeks, who tweaks my latest problems and gives me new exercises specifically directed at my latest problems.

    Recently, I was lucky to have an Indian head massage. It was LOVELY and so relaxing. I think that we should be given the opportunity to try alternative therapies, to see what works. I have never tried it, but my neuro-physio has recommended acupuncture, in the past. Also, I have found some herbal treatments help me.

    Keeping the mind active and stimulated is vital.I definitely think that it is good to encourage everyone to try new things. Until you know that something is too difficult, have a go. My ceramics really help me. You need to find the thing that you love doing (creative or otherwise) and adapt it, if you can. Time flies when you find your 'thing'.

    Hope this helps.

  • 'Housing priorities' should be considered for people with disabilities. I had put my name on the housing list because of my disability. I was told that as I have saftey adaptions fitted into my house and that there are only two steps at the entrance to my house I am considered as a low priority! What they have not considered are the problems I have regarding space to move around in.

    A disabled persons 'needs' should be considered above the actual disability diagnosis itself. Some people with Ataxia for examle can live, work and socialise easily enough where others struggle more profoundly.

    'Regular follow up care' from appropriate health care professionals should be ongoing. For example; Physio therapy, Psychology, Ocupational therapy and Neurology interventions. I now only receive help if I insist on it. I asked my doctor in February to refer me back to see my Neuropsychologist. It had taken seven months before they gave me an appointment!

  • I made a small enquiry about this and I was informed that the waiting list was anything up to approx` 10+ or even longer years, regardless of my ataxia..................... :-O

    I do have a stair lift, bath lift, raised toilet seat with frame, and handle supports around the hand basin the bathroom. I`m waiting for a `occupational therapist` or whatever the title is visit to see if I can get a wet room.

    Using the rear door to the house is out of the question as their are three very high steps, and the front door is not too bad as the step is low. Anyway if I do go anywhere - hospital mainly or Dr`s (when I can get a appointment) it`s by ambulance for hospital visit or wheelchair taxi to doctors.

    The BIG problem is moving from room to room.

    Funny old world isn`t it.

    But never mind, small steps, small steps, must not upset the social services people must we, they may take a week off on the sick :-)

  • Hi John. I may never be re-housed as our area council basis local housing on prioriy and not where a person is on the list!

  • Not many council houses around here most of them were purchased under Thstchers right to buy....

    All the Nursing Homes are Private and really expensive.

  • I visit my Uncle, and the access is difficult for me, so I really sympathise with anybody

    who has to deal with these sorts of problems as part of every day life. And lack of

    space to move around must be frustrating, with equipment and aids standing

    shoulder to shoulder.

    Recently I arranged for my Uncle to view a bungalow, it was on the whole perfect. But, it

    had a wet room, no bath. Nothing ever ticks all the boxes! xB

  • Personally, I believe that the thing that would help most of all is a proper care co-ordinator.

    Someone who can help organise the things that need doing. This does not need to be a doctor or even a nurse, just someone who knows the ropes as it were. Someone who can call the GP for us if we are having a bad day and can't get through to the GP - who never has enough time anyway.

    A care co-ordinator could help arrange transport to Atos visits, help with filling in the forms and much much more. I wouldn't expect these people to actually fill in the forms for us, but they could help find specialist agencies who could help.

    I used to be very organised and efficient, but the depression I had before my diagnosis, and now the depression brought on by finding out I have the dreadful condition, has rendered me struggling on some days to function at all properly, never mind fill in forms or deal with medication, or arguing with hospital transport who have never heard of ataxia.

    I believe this would considerably help us, and I also believe it would actually save the NHS bucket loads of money by reducing time currently spent by doctors, specialists and nurses. Not all their time obviously, but could be quite a lot saved if we (and they) had care co-ordinators to help us.

  • Hello Wyndham, re the filling in forms help part. I got in touch with my local "Citizens Advice Office" they were so helpful even came to visit me at home. They filled in the form(s) on my behalf etc and stiell keep in touch via telephone and home visits.

    Why not give them a call :-)

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