When is an ex-Carer no longer able to belong to a Group?

[carersgroup]

We have always encouraged ex Carers to carry on belonging to our Group believing that they still need our support plus they can still play a role and contribute. A debate is now going on that this should not be a forever thing and there should be a cut off point. The other sticky point is should they still enjoy the same subsidised benefits that we offer to Carers on trips, holidays, theatre etc.? Your comments will be greatly appreciated.

[Guest]

If they are still helping others and contributing (voluntary at no charge) then why even think of dismissing them from your group. How awful for a person to think they will only be welcome as long as they are usefull though.

[charles47]

We don't have a hard and fast rule at our carers centre. Very often, a carer who loses their caring role through bereavement has no other contact or social network than that they had through a carers centre and we feel it would be wrong to deny that. We keep our former carers in touch and continue the social support until or unless they are ready to "move on." In many cases they can offer our groups a wealth of experience and support for newbies: I ask my ex-carers to be on the lookout for and to welcome the newbies into the fold. It's often less daunting than dealing with "the paid help" (me). If they are doing that, then I feel they're entitled to the same benefits they'd have had from us as carers - especially because their financial situation is often worse.

For advocacy, we continue to offer support for up to two years, on the grounds that it can take that long to sort out issues that were related to the former caring situation or the aftermath of the bereavement. Remember, too, that any support the carer might have had from statutory authorities will stop - usually immediately - and the financial situation will often go from bad to worse. Sometimes that is when we are most needed because of the total insensitivity of the system.

For counselling, we keep the door open indefinitely because those issues never fully go away for some people.

And we also try to encourage our former carers to help as volunteers (either helping our centre or other voluntary groups/organisations) because their experiences can help others in ways we may not be able to help...while giving them a new purpose. By no means does everyone want to do this, but for those who do it's been pretty successful.

[Myrtle]

I think the cut off point should be when the ex carer is ready to move on, not a specific time, as if they have been a long time carer, any previous social network they might have had will have long since disappeared and the centre will be where all their friends are. so unless and until they make new friends, to cut them off after a certain time period would be very unkind. Plus they have a wealth of experience to offer.

[carersgroup]

Thanks for the replies which I am pleased to see echo my thoughts and sentiments. Not that it makes any difference but in comparison with Charles we are all Carers who run the group voluntarily, even to the extent that it often costs us personal money due to the inadequacy of funding, we do even have two ex Carers on our committee. One of the ex Carers I persuaded to keep on board immediately her husband passed away and to assume the task of organising our recent long week end to Blackpool, I kept hold of the money side of things and was around to guide, assist etc in the background. She did a magnificent job and was only too fullsome in her praise for this having helped such a great deal in coming to terms with her loss.

[Matt Hill]

I think this is an interesting thread. Getting on with your life after caring has huge challanges and I would agree with all that has been said.

However if I can play devil's advocate, is there an issue about people speaking for carers who have no recent experience of caring?

I am thinking of a few years ago when I was involved in a local carers group and one particular person would always put themselves forward to sit on council committees and consultative groups, to represent the views and experiences of carers. But this person had not been a carer for over 20 years and of course in that time the whole social care and benefits systems had changed so much. There was a feeling that this person wasn't right to represent carers but no one in the group knew how to bring it up. It wasn't that they weren't valued just that others felt it was time they stepped back a bit.

What do others think about that scenario?

[Brindleboy123]

I think this is an interesting thread. Getting on with your life after caring has huge challanges and I would agree with all that has been said.

However if I can play devil's advocate, is there an issue about people speaking for carers who have no recent experience of caring?

I am thinking of a few years ago when I was involved in a local carers group and one particular person would always put themselves forward to sit on council committees and consultative groups, to represent the views and experiences of carers. But this person had not been a carer for over 20 years and of course in that time the whole social care and benefits systems had changed so much. There was a feeling that this person wasn't right to represent carers but no one in the group knew how to bring it up. It wasn't that they weren't valued just that others felt it was time they stepped back a bit.

What do others think about that scenario?

This is interesting. I have to assume that the person in question had a genuine concern for the rights of carers despite the lack of personal experience over a long period. However, if this person was able to vocalise the concerns of carers in an articulate way and in a way that other people listened then I think having him/her on the committee would be beneficial.

Personal experience is always of benefit in all walks of life. However, I worked in the NHS for many years and have to say that some of the individuals working with patients that showed real empathy had not necessarily had personal experience of illness etc etc., but they did a damn good job and many patients were very thankful to them. I would be interested to hear other members comments on this interesting subject.

[Eun]

I would suggest that an ex carer knows a lot more about what it is like to care than a paid employee of carers organisations does. After all the ex carer has lived the life and "walked the walk and talked the talk" so to speak.

I was a founder member of our carers group but no longer have anything to do with them - once the "professional" paid employees got involved it all changed and it was all about if your face fitted you got the help. They didn't want bolshie people who knew their rights and wanted to fight for them - carers are supposed to be grateful for any help they get and not to disagree with those who decide what a carers needs are.

I'm sorry but I don't want aromatherapy and stupid coffee mornings and to go hillwalking - I want my son to get what he needs (his physio etc) - thats the way they can help

I feel sometimes that the carers centres are there as a sop to the carers - give them their little centres and they'll be satisfied and not push for more.

If disabled people had their rights there wouldn 't be any need for us to be carers and we could go back to being mum and dad again.

Not wishing to offend anyone - my husband and I have been carers fr 23 years.

Regards

Eun

[marie66]

Hi, the local princess royal run our Carers Centre and their rules are for 3 years after you stop Caring.
We on the other hand are a support group, we still have the help of a worker from PRTC but we have our own constitution and this is one of the changes we made - we allow Carers to stay as long as they choose, they have a wealth of experience and information to be passed along to any newbies.
Our current chair is an ex-carer, (his wife died in the last year), he is very active in both the local comminity and other orgs.

Matts point:
When we are asked to send reps to any conferences/boards/ committees, it's offered around the table, I went to the Epilepsy conference in Glasgow as I was the only Carer dealing with this condition.
4 other Carers went with me as there were issues discussed which could help other Carers too and our group paid all the travel.

We keep afload by using a local community centre; our council gives a discounted rent.
We pay £1.00 for our tea and to cover our costs and hold a stall 4 times a year selling some donated books and bric-a- brak.
Lastly a section 10 grant from social services helps keep the wolf from the door!

marie x

[Matt Hill]

Intersting replies. In the case i mentioned, it wasn;t that anyone wanted the person to leave the group it was just they felt it was time they stopped dominating everything and let some newer people come through. One of the concerns was how relevent is this person's knowledge regarding the specific services in that area - rather than about caring in general.

I think these kind of issues are probably common to all types of community groups not just carers.