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Thread: Slow service from NHS and Social Services

  1. #11
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    Hi,

    Just reading this discussion has made me feel that we have been so lucky with our community rehab team here in Bridgend. They have made it their business to come and see us, even shortly after my husbands dx when we didn't particularly welcome the intrusion of people then but now I can see that at least we did have their support and had names and numbers quickly to contact. Equipment we've needed and asked for has been provided quickly within days not weeks and I'm not posting this to rub people's noses in it but just to say someone somewhere is getting it right.

    It's sad to see that not everyone gets this service, I can't imagine how to cope if you have a battle to get what you need when you are coping with this dreadful disease daily.

    Having said that, we weren't given any info after the initial dx meeting with my husbands consultant and were left to get our info from the Internet which we quickly decided didn't help as there was too much too soon so a 'pack' of some sort sounds like a good idea.

    Tracy

  2. #12
    Forum Member sarahezekiel's Avatar
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    Hi Tracy

    That's so good to hear! How did the community rehab team find out about your husband? Did your GP pass on the information?

    My hospice will help me with everything now. It was so difficult before I was referred there. I also didn't like the intrusion. It's a really sensitive area and hard to handle for health professionals. I'm convinced that an information pack on diagnosis would make a big difference.

    Best wishes

    Sarah

  3. #13
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    I am returning from France to Norfolk at end of September and had been in touch with MND
    This week I recieved an e-mail from the NHS hospital MND team giving me names and contact numbers for all the specialist nurses, physio and OTs and the community Neuro nurse has been in touch.
    This has been so reassuring for me and has taken some of the stress out of the move. Full marks and thanks to the MNDA.

    There is no way for patient details to be provided to MNDA by medical staff but a big help would be literature handed to patients at time of diagnosis.

    Have a nice weekend,

    Ian
    Die? That will be the last thing I do

  4. #14
    Robyn Copley-Hirst
    Guest
    Quote Originally Posted by sarahezekiel View Post
    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!

    Sarah
    We're really glad to hear she is now receiving support. It's never what we want to hear when things don't slip into place as easily as they should. We look into all cases like this to improve our service and although obviously I cannot comment on individual cases, I can assure you that lessons are learned from instances like these.

    The weekend is looking a little dismal so far here in Northampton, but I hope everyone else is enjoying theirs!

    Best Wishes,

    Robyn

  5. #15
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    Quote Originally Posted by sarahezekiel View Post
    Hi Tracy

    That's so good to hear! How did the community rehab team find out about your husband? Did your GP pass on the information?

    My hospice will help me with everything now. It was so difficult before I was referred there. I also didn't like the intrusion. It's a really sensitive area and hard to handle for health professionals. I'm convinced that an information pack on diagnosis would make a big difference.

    Best wishes

    Sarah

    Hi Sarah,

    Thanks for your reply. It's hard to remember now how they got our info, I don't have to tell you how much happens in such a short space of time! but looking back we think it was our local mnd nurse who referred us after a clinic appt.

    Checked my records and we had an initial intro from the rehab team with contact numbers, leaflet detailing who the team was and their roles a month after dx but it was a few months before we
    asked them for help. It was just so good for us to have that info early on but it took a while before we were ready or thankfully needed help. The team have been brilliant but I'm quite assertive at sourcing people and asking for things, I still think a lot more needs to be provided to people in the early stages.

    I've only just received an invite to our local Mnda support group with dates of meetings 10months after my husbands dx!

    Tracy

    Tracy

  6. #16
    PoetChristopherRobin
    Guest
    Hello again people, it was an mnd article that is saying the social services as other parts of the NHS are slow, the MND staff in Newcastle are indeed the best as is the district nurse too.

    Itís the councils OT that has put me onto a physio before I get the walking stick, and I am having to wait until they contact me with an appointment this is already three weeks on, despite the fact I am a danger to myself as others when out at town or shops, hence the mnd association are right in what they say

    As for social services they have persistently refused me a social worker because I can still manage four flights of stairs (they are seemingly blind to the fact that this is exactly why we urgently need a social workers help) see here flour flights of stairs just to get in and out the flat

    http://myweb.tiscali.co.uk/bobjude/test.wmv

    It was the actual GP who was in denial in my case, they did not believe that I had MND, another story that.

    Sarah is right for the first two weeks if not for my working online at the time, I had nothing at all other than Google which pointed me here to the forum and association

    G60dubber the video is a great idea, I know these work too as we used to use them in a charity that I established in my younger days

    It needs massive public attention so they can get a great deal more than the current 1.6 million a year from fund raising

  7. #17
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    Westhoughton, Bolton, Lancs
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    I just wanted to say that we also feel exceptionally lucky on the all the help we get from our GP , Neuro team and Bolton PCT, at Hope hospital where the Neuro team appointments are held, they have a MND representive there and also someone to discuss benefits with you, along with the usual dietician, speech ,physio etc. We feel very supported as the PT, OT, Speech Therapist,podiatry,Gp and District Nurse all come as home visits and then we have peace of mind of having Dr Ealing (Our Neuro) and a specialist nurse at the end of an email if an emergancy arises, or we can telephone too. Only this week Mick was assessed on Tuesday for a Bed hoist and it was fitted on Thursday so cannot complain on the services we receive. We are truly grateful to them all. G60dubber you really do come up with some great ideas xx Ang
    Last edited by angnmick; 28th August 2011 at 14:49. Reason: additional info

  8. #18
    Forum Member sarahezekiel's Avatar
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    Poet, say that you can't manage the steps anymore. That should make them get a move on. Sometimes you have to exaggerate, or tell a little white lie...

    Good luck.

    Sarah

  9. #19
    Robyn Copley-Hirst
    Guest
    Update -

    On top of the info in my previous post, regarding reaching out to those newly diagnosed with MND,

    We do work to let health professionals know of the support we provide and work towards encouraging them to make newly diagnosed people aware. We work with GP's as well as specialists and care centres who are more likely to come into contact with people.

    MND Care centres flag our service and whenever we are informed of a health professional who could benefit from guidance on how best to approach the issues MND raises, individuals can request that we send our GP booklet out to their GP. Most GP's will only come into contact with maybe one or two MND patients in their whole career, and many none at all, so we do often receive direct requests for information, too.

    We do agree that ideally every single person diagnosed with MND would be made aware as soon as possible of our support, but we do have to take the lead from the patient and their consent. GP's and specialists, although many are very helpful and will always make those with MND aware, they are not obligated to do so and neither can they pass on patient details to ourselves without consent.

    I have directly passed on everyones suggestions made on this thread and they will be reviewed and be fed into our ongoing feedback from you all to see If there are any improvements that we can make. This as this is an area which we are constantly having to work at, reassess, and it is a neverending task to increase and maintain awareness and the information we give out - so your feedback and experiences are very useful.

    Best Regards and thanks to everyone for letting us know your experiences and thoughts on this,

    Robyn

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