Page 1 of 2 12 LastLast
Results 1 to 10 of 19

Thread: Slow service from NHS and Social Services

  1. #1
    PoetChristopherRobin
    Guest

    Slow service from NHS and Social Services

    It was saying in a recent publication that I had received that social services are very slow in helping folk with a disability. In that weeks as months will pass while someone gets caught up in the decision making process. And often as in a case similar to my own, the illness can spread that fast that its after someone had actually died that social worker will call to offer the help they were asked to give back in time? For a further example the NHS waiting time to be assessed for a wheel chair is up to 12 months

    I’m having the same problems right now, with social services and with parts of the NHS it’s a while back since we asked for a social worker and they say because I can still get about I can’t have one. The problem is that without a social worker there is no occupational therapist to help us with re-housing

    I asked the community nurse, three weeks back to get me a particular walking stick to help me maintain my balance; she measured me and passed this request on. Then a week later an NHS occupational therapist came to see me. She is also asking for other things that will help me greatly where we currently are, then a man from the loan service rang me up the following Monday said he would call Tuesday with the stick and other items. This morning now Thursday I had to phone them to chase this up. They are awaiting a physio therapist coming to see me?

    Indeed if I died today and they came next week to fetch the walking stick etc can you imagine how distressing this would be to my wife?

    We need to campaign for social services and any similar service to get their fingers out when helping anyone with a terminal or life threatening illness. They need specialist workers who will ensure that those folk in genuine need for rapid assistance are dealt with urgently and social services need the same kind of urgent support staff

    Needless to say I will be sending this to the Director of Social Services and seeing what response they give
    Last edited by PoetChristopherRobin; 25th August 2011 at 14:47.

  2. #2
    Robyn Copley-Hirst
    Guest
    You might be interested in the Association's Campaigns website, Poet. Check what is going on in your area and what campaigns are going on now and in the future.

    It might make you feel a little less alone in this to know that these issues frustrate many people.

    http://www.mndcampaigns.org/

    Robyn

  3. #3
    Forum Member sarahezekiel's Avatar
    Join Date
    Dec 2010
    Location
    London
    Posts
    244
    Hi Poet and Robyn

    I was actually talking to my carer about this today. The same happened to me and now I've met a woman at my hospice with mnd, who is experiencing the same problems. I even received an email yesterday from someone I've never met, asking how to get care set up. It's not the first time I've been asked.

    Part of the problem is that newly diagnosed sufferers don't know who to approach for help. I think that we desperately need a system where the MNDA are informed of every new patient diagnosed with mnd. Surely, GP's/neurologists could be asked to do that? Then the MNDA could send out a standard letter offering the services that they can provide and how to apply for benefits and care. It can just be a standard letter, which wouldn't be time consuming for the MNDA.

    The fact is that most newly diagnosed people will need help at some point. Usually, it's sooner rather than later. If the information can't be passed onto the MNDA from GP's/neurologists for confidentiality reasons, maybe an information pack could be given to hospitals and surgeries? I know that this could be difficult and expensive but I think that it's extremely important.

    I was just given a leaflet about the MNDA from my neurologist. I was too scared to phone and it didn't give me the information that I needed. I understand that some people wouldn't want to be bombarded after diagnosis and might even be in denial. But if they were given the information that they need they would probably keep it. I was in denial but kept my MNDA leaflet on top of my fridge!

    Robyn, please can you tell me what you think and whether my idea could work? I've never forgotten how difficult it was for me to get help and think that it's sad that it's still happening 11 years later. I know that it won't make social services speed up but at least we, as patients, would perhaps apply for help earlier.

    Thanks

    Sarah

  4. #4
    Forum Member G60dubber's Avatar
    Join Date
    Jan 2011
    Location
    Lincoln, England
    Posts
    467
    Myself and a friend who's partner has MND have started roughing out a short film production that contains interviews with a GP, member of outreach & Prof Pam Shaw. The plan is to present to care providers, gp's etc & leave copies with them so they have a information for new patients, reference point for further details and contacts for relevant support / care for newly diagnosed patients. This will hopefully overcome any patient confidentially issues with referrals.
    Life without love is like a broken pencil..... Pointless.

    http://mndestroyer.wordpress.com/

  5. #5
    Forum Member computatec's Avatar
    Join Date
    Dec 2010
    Location
    Welwyn Garden City, Hertfordshire
    Posts
    321
    Quote Originally Posted by G60dubber View Post
    Myself and a friend who's partner has MND have started roughing out a short film production that contains interviews with a GP, member of outreach & Prof Pam Shaw. The plan is to present to care providers, gp's etc & leave copies with them so they have a information for new patients, reference point for further details and contacts for relevant support / care for newly diagnosed patients. This will hopefully overcome any patient confidentially issues with referrals.
    I think that is a really constructive idea. When one has just been diagnosed with MND it is more than enough of a problem to take in what is happening and I found it almost impossible to try and explain it to someone else. I was unable to find a simple booklet that would explain my illness to a carer and I needed that. Good luck with your project.

    Clive
    Living with MND. There is a solution to every problem - never ever give up.

  6. #6
    Forum Member
    Join Date
    Feb 2011
    Location
    eastbourne
    Posts
    26
    There seems to be a catch 22 here as on one hand social services/occ. therapists know what you need but on the other hand some seem to know that progession can be fast or mabe slow,so sit back and wait to see what happens.The obvious problems arise when its fast,then the system cant cope

  7. #7
    Forum Member sarahezekiel's Avatar
    Join Date
    Dec 2010
    Location
    London
    Posts
    244
    G60dubber

    I think it's an excellent idea too. Are the MNDA supporting you? I'd love it to be nationwide and not patchy. If I can help, please let me know. What about the costs involved? Thanks for doing something!

    Sarah

  8. #8
    Forum Member G60dubber's Avatar
    Join Date
    Jan 2011
    Location
    Lincoln, England
    Posts
    467
    It was something we were going to look at on a regional basis initially and then if it was well received look at opening it out. We were just going to use a HD camera, tripod n cd burner so don't know if it would be professional enough to push out nationally.... We were going to pick up the costs so we had control over it to a great degree. (based on previous experiences of producing an MND film).

    The other chap used to work in the care environment so has got a good handle on what the content should be, and has already got the wheels in motion for the interviewee's. Just need to get the dates sorted...
    Life without love is like a broken pencil..... Pointless.

    http://mndestroyer.wordpress.com/

  9. #9
    Robyn Copley-Hirst
    Guest
    Quote Originally Posted by sarahezekiel View Post
    Hi Poet and Robyn

    The fact is that most newly diagnosed people will need help at some point. Usually, it's sooner rather than later. If the information can't be passed onto the MNDA from GP's/neurologists for confidentiality reasons, maybe an information pack could be given to hospitals and surgeries? I know that this could be difficult and expensive but I think that it's extremely important.

    I was just given a leaflet about the MNDA from my neurologist. I was too scared to phone and it didn't give me the information that I needed. I understand that some people wouldn't want to be bombarded after diagnosis and might even be in denial. But if they were given the information that they need they would probably keep it. I was in denial but kept my MNDA leaflet on top of my fridge!

    Robyn, please can you tell me what you think and whether my idea could work? I've never forgotten how difficult it was for me to get help and think that it's sad that it's still happening 11 years later. I know that it won't make social services speed up but at least we, as patients, would perhaps apply for help earlier.

    Thanks

    Sarah
    Hi Sarah,

    We actively provide information to health professionals about the services that we provide and it's interesting that you were told about the Association by your neurologist. Because of the numbers of people diagnosed with MND are thankfully low, although definitely not low enough, we often target and provide this information to specialists such as neurologists as these are the people most likely to be in a position to meet those newly diagnosed.

    You are right to being up the word 'confidentiality'. This does mean that a Dr or health professional cannot pass on anyones personal details to us. We do provide packs to people who are new to us, but I will say that we are constantly trying to think of better ways to make people aware of what we do so we can reach out to as many people as possible. But there are many people who we do not have contact with and therefor cannot offer help to, this may be because they do not know the help we can provide, they may not need or want this help for whatever reason, we don't simply don't know.

    You are absolutely right that for some people, asking for help earlier means things can be set in motion and we can work together to try and make everything just that tiny bit easier. Making all people affected by MND aware of what we are here for is an issue we look at time and time again to see what more we can do to be as effective as possible.

    I'll pass your specific idea on, Sarah and all feedback such as this from people who understand what a difference this can make is really useful. I will get back to you as to your suggestion and add anything I've missed off to the work we do and will do to raise awareness.

    Very Best Regards - and enjoy your weekends.

    Robyn

  10. #10
    Forum Member sarahezekiel's Avatar
    Join Date
    Dec 2010
    Location
    London
    Posts
    244
    Thanks Robyn. I meet and get emails from people who just don't have the support that they need. Actually, I emailed mnd connect about one woman and never received a reply. I asked for someone from the MNDA to contact her and it took months. I don't know whether my email was ever received. This particular woman doesn't have a computer and can't speak on the phone. I know that she has support from the MNDA now, so that's a relief!

    I know that it's extremely difficult to reach everyone. If my neurologist had given me something more informative than a leaflet, that would have helped. A pack would be better. But it's a big country! Maybe a pack can be given to neurologists who specialise in mnd? I had about 4 '2nd' opinions! I met most of the specialists in London - one of them could have given me a pack!!

    Have a good weekend too.

    Sarah

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •