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PoetChristopherRobin
25th August 2011, 12:59
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

Robyn Copley-Hirst
25th August 2011, 17:09
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

sarahezekiel
25th August 2011, 19:05
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

G60dubber
25th August 2011, 19:16
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.

computatec
25th August 2011, 19:38
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

twitcher1
25th August 2011, 19:44
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

sarahezekiel
25th August 2011, 19:46
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

G60dubber
25th August 2011, 20:55
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...

Robyn Copley-Hirst
26th August 2011, 11:02
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

sarahezekiel
26th August 2011, 22:54
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

Crazy girl
26th August 2011, 23:22
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

sarahezekiel
26th August 2011, 23:49
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

ian
27th August 2011, 08:13
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

Robyn Copley-Hirst
27th August 2011, 16:19
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

Crazy girl
28th August 2011, 10:32
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

PoetChristopherRobin
28th August 2011, 13:43
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

angnmick
28th August 2011, 13:47
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

sarahezekiel
28th August 2011, 19:24
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

Robyn Copley-Hirst
31st August 2011, 16:04
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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