My wife was diagnosed some 8 years ago, and on the same day we attended the local Branch of Parkinson's. This is uncommon I admit. Since then we have been active in this branch.
An on-going concern has been the links for those newly diaganosed and them being made aware of Parkinson's uk, and/or their local support group. As a branch we seem to be 'missing' contact with many of these newly diagnosed. Pre-empting comments on 'recruit bums on seats' this is not what we are about. What we are about is ensuring that ALL concerned, whether patient, carer (I prefer P.A.) or family are aware that there is a local group offering support, if they need this support.
To that end, may I suggest a review of the application form used to join Parkinson's uk. Currently there is a very small box asking the applicant to 'tick' if they wish to have their details sent to branches. I would propose the reverse, that they tick only if they do NOT wish their details to be passed to branches. We are loosing many who would benefit from branch support by this opting IN rather than opting OUT.
Are there branches that have a different approach to this issue? We wait to hear of new members from Head Office, but do others recruit locally via other structures/systems?
Finally, we have experienced delays and even gaps in Head Office forewarding details of new members to our branch. Are we alone in this?
I would welcome comments on any of the above, and in particular on my final point above.
To end positively - a great organisation- and all the above is aimed at making it greater!
This has also been of concern to our local branch - and we have suggested that the welcome letter gives contact details for the relevant local branch. Given the projected drastic reorganisation of the NHS, and the variability of people's experience with their GPs, it is surely vital that the membership is as strong at both local and national levels as possible, in order that people with Parkinson's - often very complex - needs are properly met.
Many newly diagnosed want to keep their diagnois private. I think you are aaying that the box opting in to ones details being given to local branches is often overlooked and that branches only receive details by default.If details were passed to local branches,unless one ticked the box,many would feel it was an invasion of privacy.If it is easy to miss the box, then it works both ways. By all means perhaps details of local branch meetings should be sent to people as soon as they join the Society. However, not all people want their names with their diagnosis forwarded to people who may be relatives or friends of people with whom they work or socailise.My husband has always been up front about his Parkinson's and in fact often wears a T shirt proclaiming he has it, but many people need time to come to terms with thing privately.It may be a form of denial ,it may be because they are not ready for others to know. It mzay even be because they do not want to move in a circle that consists of P.W.P and their care partners. That is where this Forum is so good in that you can, if you wish, remain anonymous, so those newly diagnosed can ask questions and get support without anyone knowing who they are.Over the years we have had some very personal problems aired on here.If branches are well advertised and have a high profile in the area people will join when they are ready.If they receive leaflets and letters too early I feel it would put people off.You have,perhaps to reach a state of acceptance before you may want to join a branch.Moreover,the world is changing and it may be that face to face contact for just socalising among a single group who have nothing in common but a condition, will become less common,a pity but......
I refuse to use the word disease or carer if I can possibly help it.
English dancer I personally agree with you.When I was first dx I didn't want to tell anybody,One thing sticks in my mind.I rang a helpline no when i was first dx and i thought it was confidential and it wasn't.This really upset me at the time and i felt betrayed.Everyone is different and some people have to make their own way.
Our local branch has a drop in every month, which is great for carers and sufferers alike.Its good social occasion to show that we not alone with our condition. I always make a point of while i am waiting at my regular PD clinic to speak to new faces and promote the branch drop in
What a very understanding and wise post. I think that joining clubs and societies is not for everyone and in the case of P.W.P. those who wish to, will find out about such groups when the time is right for them.
What many of us really want , is to put our conditions on the back burner , and try to feel like ordinary people mixing in with others when we feel like it. I have said to work colleagues , friends etc that the best thing they can do is treat me the same as they always did -- I get much pleasure in being with them ,especially at work. It may be a harsh thing to say, but I don't have time or inclination to start a friendship with people whom the only thing I have in common is a medical syndrome.
I know such groups can be terrific support , but it's all a matter of personal choice. The support group committee does not know when the newly diagnosed person is ready for information, let that person find out in their own time if they want to . I'ts easy, there is so much information available if you want it.
You're right e/c/d.
This forum feels like a safe place to let off steam , make an enquiry, have a laugh. The anonymity is it's great strength. All the best.
I mean anonymity ! ! ( what a tricky little word )
The one thing about a room full PPS and their carers,is just that your one of the crowd You dont have explain or excuse your condition.Its a revelation to see people further down the road than you coping with there Parkinsons Not every bodies cup of tea...........one tea please ,milk no sugar
Hello Robfen !
I've read your 2 posts and would like to comment. I think the idea of 'drop in ' is fine. Feels a bit more casual , not like a formal meeting. You are in control of how long you stay and who you speak to.
You've used two words in your first post which I don't like, sorry. Sufferer and carer. Carer maybe not so bad ,but they feel like negative words. See what I mean. When we first recieve this unwelcome news, we have images. You all know what I mean.
I would prefer not to have those pictures in my mind. In fact, I'm working hard now on banishing them. Why would I want to go somewhere for a few hours where these pictures were reinforced again ?
I hope I've not offended anyone , I'm only being completely honest in a place which I feel is safe and supportive. I would love to knoew if anyone else thinks the same ?
Acceptance Lorna is word we don't want use with Parkinson and i cant speak for you but going to dropins with other Parkies has helped me to come to terms with my condition. I know at this moment you don't feel that way and everybody has got the own way of dealing with it. But i assure you a dropin is no way negative or depressing everybody leaves with smiles on there faces. There is downside, people pass on ,ive lost 4 friends but they were inspirational to me and fond memories of them.I was in vacuum till i joined my local group and personally i feel a sufferer because Parkinsons has taken so much away but my wife is not offended by the word carer
many differing viewpoints!!! as a Parkinson`s Disease sufferers wife I am struggling to come to terms with the changes in my beloved husband.my hospital said "you have parkinson`s disease " and that was it, opur nurse is wooly to say the least, i feel we are on our own with this,where is the help??
Sorry to hear that you feel there is no help . In fact Parkinsons U.K. has a slogan ' No one has to face Parkinson's alone,' I'd like to think that's true.
How do you find your own G.P. is ? Try to talk to him about your worries and fears regarding your husband . It sounds like there may be a Parkinson's nurse and you need to be in contact with her. Find out how you can get in touch with her . Maybe the arrangement for his care and follow-up have not been explained very well to you. Don't be afraid to ask the Dr. or nurse any questions you like.
I hope this helps. Also , if you need it , there is the helpline number at the top left of this page. They are very kind and would help you with any query you had. Best wishes.
Welcome to the forum. Sorry you have met the criteria to join us, but hope we can be of help and support.Phone or E mail the help line on this website and ask them for the name,address and telephone number of your contact for the local support group
My husband was just diagnosed.I looked for a local support group as I felt the need to do something.The two nearest us both meet in the afternoons which is no good at the moment because he still works.Yes I know that may change.
He was given a prescription at the hospital and was told to come back in 6 months.We went to the GP and he said he was waiting to get a letter from the hospital.So we went to the library and got books out.Anyway,early days.