Local Support Groups in the UK.

[Peter3]

Is anyone on this forum involved with the new local support group for sufferers of PSP/CBD arranged by the PSP Association?

If so, would you be prepared to share some of your ideas as to what you are doing within your group please?

Peter3.

[toyota11]

Hi Peter3, We attend the Pocklington Support Group which meets monthly and draws PSP families from a large part of Yorkshire. We share experiences, raise funds for PSPA with raffles, concerts and tea parties, trying to get the locals involved. In such a large area there are only a handful of families with a member living with PSP/CBD but we have support from people whose loved ones have already passed over. What we have found is the disparity of help available from NHS and Local Care Teams. Ours is excellent but others close by are not good at all. The camaraderie is excellent. Another Peter.

[Peter3 in reply to toyota11]

Thank you Peter for your reply. I have just started a group in the Bristol area. So far we have met and shared ideas and information over tea and cakes (homemade) and we have a day out to a local National Trust property and grounds in June. Hoping the weather dries up by then!

You have given me some good ideas to put the group next time we meet. Like you we are small group but growing and people are keen to be involved.

Let's keep in touch.

Peter3.

[Hidden]

We attend the Cambridge Support Group. They meet about once every three months. Last meeting was on 1st March 2014. They had arranged for a representative from the DWP to talk about carers allowances. It always amazes me that people who are attending and who are members of the PSPA still do not know often what they are entitled to and / or what benefits entitlements they have. Last time I raised the issue of the ICER scheme, which is an emergency plan in case something happens to the carer. Everybody should know this and should apply for the so-called 'blue card'. Amazingly most attendees had never heard of it. So those meetings are very useful to get informed and also to discuss and exchange experiences. Including I should add, where you can get the best clinical help, which hardly ever is your GP. It is not always easy to set up a care team and make sure that the patient is registered with various of the NHS, such as assessment for continuing care, palliative care, Parkinsons, Occupational therapist, Speech therapist, as well as arranging for LPA's (for finance and also for Health). Also to think about massage treatment to support mobility as long as possible and to prevent chronic pain.

[Peter3 in reply to Hidden]

Gerko,

Thank you for your reply and some really good ideas for me to put to the group when we meet next month.

The Bristol group is still very much in the initial stages of development, but we do have a family and carers day out coming up in June.

It would be good to stay in touch.

Peter3.

[Hummingbird_]

Hello Peter3,

I have set up the Warwickshire Local Group - we have only been running for a few months and the people who come along have all given positive feed back (Phew!). As with others we have had various Healthcare Professionals in to speak, we are planning social events such as meal out, day trips, non PSP associated speakers, etc. Our emphasis is on promoting awareness and getting the help that is needed - we would love to do some fundraising at some point but as our group are completely self-funded we want to make sure we are viable first.

We have also set up a Facebook page; facebook.com/groups/psp.war... where people can post or share ideas, questions, suggestions, fund raising events etc.

Our meetings are every month, the next meeting is on Sat 22nd February in Coventry and our speaker is from the DWP! I agree with Gerko - there just isn't enough information given on this subject but it is really important as the last thing anyone needs is to be worrying over money on top of anything else.

We have some wonderful friends who very kindly supply us with a variety of homemade cakes for our meetings too (all donated - thank you Mary and Jenny), coffee and cake is always on the menu, as are mousse, yogurt, variety of juices and of course Resource for those who need it! When our SLT came we had a 'Winter Warmer' ..... soup and a roll ..... this made a nice change and was most welcome on a cold, wet, November day .... of course there was coffee and cake afterwards too

If you would like any further information please do not hesitate to ask ....... keep sharing the knowledge and ideas!

Best wishes to everyone!

Tree Hugger x

Email: [e-mail]

[Peter3 in reply to Hummingbird_]

Dear Tree Hugger,

Thank you for your reply and sharing your ideas and suggestions. Just one question, do you meet in the same venue each time?

Will have a look at your Facebook page.

Best wishes

Peter3.

[Hummingbird_ in reply to Peter3]

Hello Peter3,

At the moment we are meeting at the same place, however, because it is such a wide area that we (like many others) cover, we are looking for alternatives - it just boils down to cost at the moment. I think we could easily split our group into 3 different areas in order to include everyone, I am hoping to add an additional venue once every 3 months so that some of our members don't have to do a 70+ mile round trip - it's easier for me to travel further. The benefit of different venues is of course the ability to include more people.

One other thing that might be worth taking into consideration - many of our members were previously diagnosed with Parkinson's and still like to attend the Parkinson's Group as well - here it is the 3rd Thursday of each month - so we try to avoid that week as it's difficult for some to get transport to both.

It is probably better to have a fixed date (i.e. the first Monday of each month) rather than a fixed venue - that way people can put it in their diary without having to keep checking.

Hope this helps.

Tree Hugger

[Peter3 in reply to Hummingbird_]

Thank you for reply and advice. I have used two venues already and about to try a third one. Like your group we cover a large area so, I am trying to make it a little easier for everyone to attend at some stage of the year.

I have encountered the problem of members attending other groups on a regular basis and therefore the conflict of interests. We meet on a Thursday once a month and now I have three venues available hope to be able to fix it to the second Thursday each month.

Peter3.

[Hummingbird_ in reply to Peter3]

It is a common problem I think ....... I do hope you manage to find a suitable date and good venues too.

Please feel free to post your meeting dates/venues on our Facebook Page - I know of a couple of families who live in or near Bristol who use us as a source of information (albeit limited) - if you are not able to post the information yourself but would like me to put it on for you, I would be glad to do so.

Tree Hugger x

[wifemo]

Hi Peter3

I'm involved with the (local) Norwich Support Group, meeting every two-three months, drawing carers/ex-carers from Norfolk and Suffolk, PSP and CBD. You may have seen Linda on the PSPA newsletter as fundraiser. Coffee mornings raise funds, and a calendar for this year. As with this forum, good for ideas and helpful advice.

Mo

[Peter3 in reply to wifemo]

Thank you Mo for your reply. Here in Bristol we are in the very early stages of "getting going" so all ideas and suggestions are helpful.

Best wishes

Peter3.

[jillannf6]

Hi

Mi have PSP And the nearest group,is in Liverpool

The meetings, clashmth

[jillannf6]

Rhe