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Carers UK Forum • A debate on the support in your area.
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A debate on the support in your area.

Posted: Sun Feb 08, 2015 10:47 am
by Les Eve
I would like to find out the support that is offered in locations around the country for Carers and their Cared for. I am Carers UK Ambassador for Carers in Norfolk, always perceived as a sleepy part of the UK but I believe that the back up, support and many other things we have available up here are amongst the best, if not the best available anywhere. I have been a 24/7 Carer for 29 years and an ex Carer for the past 2 years during which I have continued to campaign. I have run a Carers Group for 14 years, worked as a volunteer for Age UK Norfolk for 5 years and also on the Carers Council for Norfolk. The Carers Council we have has reps from each of the 5 localities plus members from the organisations and charities that meets 4 times a year. The localities meet every other month to raise and debate items to take forward to the main meeting and take on board decisions from the full council or organisations, this means we influence policy and decisions from Carers rather than having policies simply imposed. A major achievement recently was the Carers input into an updated Norfolk Carers Strategy for the next 3 years and a large pot of money given to us to be able to offer a "Life outside caring grant" once a year to Carers. In March I am attending a meeting with one of our CCGs to debate "Commissioning for Carers in surgeries". Our website which is full of information and good links for support ishttp://www.carerscouncilfornorfolk.org so why not give it a look plus it would be very interesting to hear and debate what you have on offer in your neck of the woods.

Re: A debate on the support in your area.

Posted: Sun Feb 08, 2015 6:23 pm
by Eun
Basically sod all. Couldn't get to the carers group stupid meetings anyway caring responsibilities are too high, I am interested in my son getting his needs met (which also doesn't happen) not being fobbed aff with "relaxation" sessions and coffee mornings. Been there done that and bored out of my skull!


Re: A debate on the support in your area.

Posted: Sun Feb 08, 2015 7:08 pm
by Henrietta
Hi Les

Here is a link to Poole and Dorset web sites

http://www.poole.gov.uk/health-and-soci ... d-support/

http://www.bournemouth.gov.uk/SocialCar ... arers.aspx

I think we have a very good support network down here.

In the last twelve months I've had a holiday (first in ten years), beachut, cinema tickets, pamper vouchers, options for day trips and lunches, discount at theatres and gym. To be perfectly honest I am much better off now than when I was working when I couldn't afford a thing.

Offered courses on SJA for dementia and carers support,
Drop in centre for carers
Regular newsletters
So called respite sitting service but can't see the point of this as any respite needs to be doing things!
Apart from actually paying for care I don't know what more they could do to make life easier.

Re: A debate on the support in your area.

Posted: Sun Feb 08, 2015 8:17 pm
by Les Eve
Many thanks for the constructive reply from Henrietta and I will certainly look at the links you have given me. Sad to see such a negative reply from the other person, particularly the reference to the Carers Groups, my response would be "Have you tried to be proactive to change things?" and there is no indication of where you are located, maybe then someone might have been able to look into it.

Re: A debate on the support in your area.

Posted: Sun Feb 08, 2015 8:47 pm
by ladybird
Les, I'm going to butt into this and explain that Eun's son has a severe and life limiting physical disability which necessitates his dependence on a ventilator. Pro active is something she knows much about and due to no suitable respite for her son, she and her husband do all the caring with no help.

Having said that, I would disagree with her opinion towards the usefulness of some of these groups quite strongly. It wasn't suitable for me but this isn't all about me but others too and I feel if it helps someone at the end of their tether, or with financial advice or to get away to one of the "boring" get togethers which might be all someone has to look forward to, then why not. It wasn't for me but it will be for someone else, and who quantifies need? How can that be done? It can't and if there is money set aside for carers and this is a possible gateway to other services, then I'm certainly for it.

Re: A debate on the support in your area.

Posted: Sun Feb 08, 2015 9:06 pm
by Les Eve
Thanks Ladybird, comments valued but having looked after my wife 24/7 for 29 years I too have been there but no matter how hacked off you may be or depressed and I have been there also, you have to try to hang on to positivitety and keep trying to help change things. We have several Carers in our group who face a mountainous task but by mixing, socialising together once a month you build a bond to support each other and you can always pick up on something that you were not aware of. I sadly lost my wife a couple of years ago but instead of walking away from Carers and Caring I chose to stay and carry on campaigning for recognition and change, it is slowly happening bit by bit. The other comment I would raise is why are there always so many peepers on posts but very few contributions?

Re: A debate on the support in your area.

Posted: Sun Feb 08, 2015 9:59 pm
by Eun
I do campaign for change. My husband and I back our son to the hilt when he has been to the Scottish Parliament and presented (twice) regarding his petition about the lack of palliative care services for young adults.
We also backed him up when he was made Campaigner of the Year by the Muscular Dystrophy Campaign.
Also when he runs workshops for professionals to point out the severe lack of not just palliative care services but indeed any services at all to meet the needs of life limited severely disabled young adults from 18 - 40.

I simply do not see the point of the Carer's Centres for those of us with extremely high end carers duties such as my husband and I have. What do you suggest we do with our son whilst attending one of your jolly evening soirees? He cannot be left unattended, at 29 years of age he relies on his ventilator 24/7 to breathe. He cannot even scratch his own nose!!
The carers group won't offer a sitter for someone with such high support needs and I wouldn't trust a stranger to know what to do anyway as his condition can change in a moment's notice and there is no time for someone to freak out when you have to stay calm and deal with the situation.

I was the founder member of our carers group many many years ago but then the so called professionals moved in and the whole ethos changed. All they are interested in is not rocking the boat so they continue to get the funding from the Social Work departments.

They are simply offering these relatively cheap things to placate the good little sheeple carers so that they don't damn well Shout and insist on their rights!!

I have campaigned for many years I just choose who to campaign for now and its not Carers Groups. The money wasted on these should go to disabled people themselves and that thereby reduces the burden of caring on us carers.

Other thing was I had absolutely zero in common with the other people there who were all elderly and caring for their spouses or for their mentally disabled adult children. No one was in the same boat as me nor fighting the same battles and all this oneupmanship of "my situation is worse than your situation" of all the elderly folk just got on my tits quite frankly.

I am caring 24/7 I don't want to go out and spend the entire night talking about my or others caring responsibilities - I don't need to - my husband and I live it every day. Even on the very rare occasions us muscular dystrophy parents get together we don't waste the little break time we have moaning about our situations. Or boys are going to die and die young - we know so we just get on with it and cope the best we can with ZERO support.

You say it is slowly changing bit by bit - mqybe it is for the light end carers it sure as hell isn't for us and other parents like us. I was involved in the carers groups from when son was 7 - he is now 29 and nothing - NOTHING - has changed. The Renfrewshire area has the worst social care support in the whole of Scotland.

I don't want to be metaphorically patted on the head and be a good little carer and be pathetically grateful for whatever little crumb they choose to fling my way. I will fight and fight damn hard for what my son needs and everything else can kiss my ass!


Re: A debate on the support in your area.

Posted: Sun Feb 08, 2015 11:21 pm
by Scally
Moving on.....
All Eun's case proves is that you can please some of the people all of the time, and all of the people some of the time, but you can't please all of the people all of the time...
Sure we still have work to do for everyone.
But this takes money, dedication, and time.
Yes, there is quite a good range of health and social care supports in my area, and as Chair of a local independent carers centre that employs 13 staff and provides services to some 1,400 carers a year, I see the benefit every day.

Re: A debate on the support in your area.

Posted: Mon Feb 09, 2015 9:07 am
by Anne001
In response to your original question, Les, I have found there is very little support in the London Borough of Barking and Dagenham. This is one of the poorest London boroughs with a high number of elderly people. There is no Age UK (closed through lack of funds) and minimal support from Social Setvices, again due to budget cuts.

There is a Carers Centre which wasn't to my taste but admittedly may be to others. As a working carer, it was impossible for me to participate in the support group anyway.

As for vouchers, massages etc I personally would have liked them but no such luck!

Oh, and before you say I should be positive / proactive, I was working 50 hours a week and caring for mum50 hours plus a week. Inevitably I had neither the time nor the energy to do anything about it.

Eun, the care you provide is amazing. It is scandalous that you do not get more support.

Re: A debate on the support in your area.

Posted: Mon Feb 09, 2015 9:20 am
by Jade_1412
Hi les Everyone has a different experience of caring and im glad that you have the energy and drive to campaign for change and the time to do it. Im not a carer but a caree But some carers are exhausted actually i should say all carers are exhausted and if they feel going to a carers support group does not help thats okay. In the same way someone going to it and finding it helpful well thats great too. Everyone deals with stress differently. Also all caring situations are different. I think its important that all carers can express their views here without feeling judged. Afterall you are all doing a great job and if people want to express fustration and anger they should be able to do it here. In the same way if carers want to share positivity good on them too! In my region of herefordshire i have respite care well my husband does 4 hours a week but you can get up to 6 free cinema and gym for the carer and discount with money off in certain shops that particate. Also carer support groups my husband hasnt been to yet