British Lung Foundation

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Social care - what's your experience?

Good afternoon everyone,

I hope everyone's OK and looking forward to the weekend.

In my old role as specialist adviser I regularly spoke to people who were either accessing social care or would definitely benefit from doing so. This could be getting help from social services on a regular basis or for a short period when you were at your neediest or you were discharged from hospital.

In my new role as stakeholder engagement manager, I'm interested to know your stories, positive or negative.

If you have any experience of social care and you'd like to share it, I'd love to know.

Thanks,

Biddy.

p.s. If you've got any questions, please call the helpline on 03000 030 555

26 Replies

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Hi Biddy, after a shaky start with them I was offered tremendous help and support from social services. I got the right worker (a qualified one) after an unqualified one who was regularly off sick before leaving, when it was realised she had not progressed with the work that needed to be done on any of her cases. Once the right person was allocated I received help with the provision of needed aids and adaptations and was allocated a budget to buy in the help I needed at home. Life savers!

That's great Toci, and good to get the ball rolling with a positive story.

Thanks, Biddy.

does this cover occupational therapy too, as when I contacted them to do a home assessment of things that would help in and round the house they asked a few questions then said if I wanted someone to come out and assess the house and me it would take months what things did I want and she could authorise it to be done over the phone , I asked for shower seat and couple of other bits but didn't really know what was available and would have been nice if they had come out to see what they would recommend

I think OT comes under the NHS.

im not sure as had to ring the county council

In my area OT is NHS BUT the local council does an aids and adaptations thing, which I found about as much use as a chocolate fire-guard because like you I did not know what would help or what was available.

its not good when they just want to do things over the phone she wanted me to have a shower chair that fold and is fixed to the wall I explained our wall wasn't over good so in the end she said I will order a fixed chair and a normal shower chair the guy who delivers will see which is best , when he got there he had no intention of putting a fixed one up as he came to the door carrying the normal one took it to the bathroom and said the other one wouldn't fit ,

Disgraceful!

That's disgusting. No way should you have been assessed over the phone for equipment/ adaptations. I work for a local authority and have lots of OT's but no way would you be assessed like that.

They need to come out and do an assessment as well as being certain that what recommended is appropriate in your home.

Suggest you ring again and complain to a manager.

thank you bevvy I have since then moved to a bungalow which has more things fitted into ,

That is shocking M. No way at all to treat anybody- someone shoul have come to you and checked which would be best for you. I am apalled.

yes they should have but if they had I would have waited months for it ,I think a lot of its to due to the government cuts to the county council budgets im afraid when they are cutting millions of pounds off something has to give ,

The wrong areas are suffering cuts - we all know that. It has always been like this when belts have to be tightened. Wastage at the top of the tree should be the place to start. I don't like the fact that equipment which has been used to help people get mobile or eased back into work again after operations cannot be recycled to be used again. It's a sickener, yet some Counties can do it.

dailymail.co.uk/news/articl...

some of them things look brand new they are chucking away , and bet if someone asked if they could have something they would say no , good to see lynn trying to reuse things ,

Hello,

Thanks for your feedback mmzetor, I'm sorry to hear you had problems.

Who provides OT seems to be dependant on the severity of your needs/condition. Please see the link below.

nhs.uk/Conditions/occupational-therapy/Pages/accessing-occupational-therapy.aspx

Give the helpline a call if you have any questions.

Thanks, Biddy.

thank you

Is it just lung related stories you want Biddy? x

Hi Coughalot2, it's social care experiences, either from the perspective of the person with the lung condition or their carer.

Thanks!

Annoys me when I see requests to use a phone number only. Have you thought of the needs of deaf people. Pleased to see I could use the reply facility. My experience of social care is not good. Couldn't tell you whether my area supports a social worker for the deaf. My experience on leaving hospital after various ops,feet,hands was nil.mjust left to get on with it. Likewise after stays following copd flare-up. Do have a rescue pack but no one checks on me. Left to my son who works full time.

Hi grandma3, thanks for responding, but sorry to hear yours was a negative experience. Unfortunately yours is a story we hear too often.

The helpline would happily help out if you have any questions relating to care or benefits you may be eligible for and they can advise via email too.

hello@blf.org.uk

Please do contact us if you have any questions.

Thanks,

Biddy.

No help or advice what soon ever when I contacted my father's social services dept. It took several calls before eventually been my told that he was on the list to be allocated a care manager. 18 months later still no care manager so I took the matter in my own hands and dad moved to a nursing home near us. Luckily he has settled down well and is happy there.

Eventually his allocated care manager rang on the morning of dad's move to introduce himself and make an appointment to visit him. I shall not write what I said to him but it did not contain swear words but hopefully I was able to express my dissatisfaction at his department clearly and sucsinctly.

There moan over.

Sue

Hi Sue,

Thanks for your response.

Again, yours is not an uncommon experience of social care. I guess this could be that we tend not to hear about the good experiences that people have, so the bad ones just seem more 'normal', but I fear that's not necessarily the case.

Please don't hesitate to contact us if you have any questions or concerns about your Dad or his care.

Helpline - 03000 030 555 re hello@blf.org.uk

Thanks,

Biddy

My mother was living on her own in a 1 bed flat and none of us had space to take her in. She got very forgetful and sleepy, wandered round the block of flats looking for someone to help her. We visited every day and had to cook her meals for her etc, She was given an alarm to wear round her neck but kept pressing it by mistake,

We called in social services again and said we were worried about her safety etc, and he insisted we organise meals on wheels, and carers to come in, paid by herself. We got her meals on wheels, she chucked them out saying they were out of date. She refused carers and got hysterical at the thought.

We called social services back who did nothing and said she has to try carers - doh. I told him the situation being assertive with him. I then said they were waiting until she had a fall. He denied it. 3 months later she had a fall and was on the floor all night...I asked her why she didn't press her alarm and she said she never thought of it!

She was in the hospital 3 weeks, but they kept trying to move her to a cottage hospital, then they said she was being discharged one afternoon. There was no care package in place, so we refused point blank and called social services again who came and assessed her. We had endless meetings and forms to fill in with them and she was eventually diagnosed with 3 low needs, 3 medium needs, and 3 high. We then had a nerve racking wait until she was accepted for a care home. She was one of the worst ones in there.

If she had been self funded all this could have been avoided. Without us to fight for her she would have just quietly died at home before her time. . Shocking. Bev x

What an awful experience you have had. I know here at BLF press office we've been asked if anyone would be available to talk more publicly about their experiences. I don't know how you feel about doing that? My email is: press@blf.org.uk I assume your mum has a lung condition?

Hi in January of this year they stopped part of my benefits and I was told I had to look for work, since then I've had another heart attack and other stents put in , in may , I contacted the dhss in march to update them on my illness I'm still waiting ,,,,, it's now September I have spoken to someone regarding my claim and she couldn't understand why it's took so long,,, she updated my info again 2 month ago still herd nothing any advice would be helpful thank you 😀

Hi juliejon,

I'd be happy to chat about this is you wish.

I'm out of the office this afternoon, but if you call us on 03000 030 555 an adviser can book you if for a call from me tomorrow.

Thanks,

Biddy