No respite

SteveE

Our son is 47, cerebral palsy from birth, we are late 60s now. We have enjoyed respite care for many years but an episode at the only respite care home on offer two years ago led to a hospital stay, wrong diagnosis, and extreme trauma for the family.

We were told he was likely to die. And we rushed back from our long awaited break. A long story which started with poor care at a care home that had no medical cover available from the local GP, and ended after many months with the realisation that the problem was constipation and not the "(possible) aspiration pneumonia" (hospital's words) that he was being treated for. Poor care, poor handover, poor diagnosis.

The CQC have been contacted but so far no action taken. The local council continue to offer only that place. Of course we cannot use it. We cannot even mention the name of the place in front of our son. Nor even go near the place when out and about. Social services suggest direct payments and in-house care. We don't want additional responsibilities that direct payments bring and we doubt carers will be able to work within the rules and regs in our home. We as parents always manage of course. 

 And so we carry on, now with no respite care arrangements in place. An apathetic social services dept (note, not the social workers themselves!) who ignore the dangers of contracting a care home with no GP cover (social services and the care home knew this but no-one mentioned it to CQC). We need help not danger and ignorance.

A suitable care home, professionally run, with proper medical support in place and working, properly equipped for those who are entirely dependant on others, with space and quiet, is all that we ask. Kind of what we had back in the day, really. But it has gone.

Pippa_Alumni

Hi @SteveE, I'm truly sorry to hear this. I can only imagine how distressing that must have been, and it's clear to see what an impact this has had on all of you. I'm so sorry that you weren't given the quality of care and support you should have been entitled to.

You mentioned your local council, but I wonder whether you've tried contacting your MP about your experiences, to see if they can help you advocate? 

SteveE

Thanks for your reply. Yes we have tried our MP and our local councillors and been met with the same apathy. The MP blames everyone else and the councillors either do not respond or promise something that never progresses.

Pippa_Alumni

Oh I'm sorry to hear that @SteveE, how frustrating. We have other parents and carers here on the community who I'm sure will be able to empathise, and hopefully offer some practical advice too. I'm also tagging in @Zoe_Scope in case there's anything else she can add.

SteveE

Pippa_Scope said:

Oh I'm sorry to hear that @SteveE, how frustrating. We have other parents and carers here on the community who I'm sure will be able to empathise, and hopefully offer some practical advice too. I'm also tagging in @Zoe_Scope in case there's anything else she can add.

Thanks Pippa. I think we are at the end of the road in ways of support and as we have for the last two years we go on with no prospect of respite care. What we do get seems to get steadily eroded. It is worth pointing out we provide 24x7x365 care for our son and receive no financial help whatsoever in way of "benefits", so it really is all being done through love and a responsibility that we understand and act on. And will continue to do so until we drop.

April2018mom

I’m so sorry to hear that. My disabled son is 0.5 years old. I completely understand. Have you approached your local newspaper to see if they would be interested in your story or not? I applied for respite care six weeks ago but I have not heard anything from them yet. I’m going to try calling up on Monday morning. 
We are sort of in the same situation as well. When he becomes eighteen years old I’m not sure what will happen. Fortunately his older sister is willing to babysit him during the day for a couple of hours. But I need respite care during the weekdays.  

SteveE

Thanks @April2018mom - yes we've considered contacting the local media but it's quite a step and could overload us, leading to even more frustration, and lack of time to look after our son (and ourselves). That can happen too when we send in official complaints (such as why our son's regular physio sessions were removed without notice) - it is all so draining and quite fruitless. Our MP just bleats on about how the government is putting £x billions into this and that, ignoring the fact that the service doesn't provide. We'll keep going though...

However, I do advise you keep on at social services - your son is young and before long will start school which might (just) give you a bit of respite., of sorts. I wish you and your family well. Your kids seem to have a great mum.

April2018mom

I called social services today about respite care. But if I don’t get a response I’ll use the DLA money to pay for childcare. I’ve called and sent emails to them as well. 

jlo

I totally get where you are coming from I had a instance with respite & I found it hard to 're send my daughter after that. because we didn't use it we lost it. I'm without respite now to & live alone caring for my daughter I'm 53 & she's 27 I also have fibromyalgia & because she's fully funded by health they have decided to cut her hours back as well. 

SteveE

Thanks @jlo and sorry to hear about your situation. I wasn't aware of the removal of respite care opportunities due to lack of previous use - I thought it was a fixed entitlement for folks like us. Your comment about being funded by health is interesting (and worrying) to me as I recently sat in on a funding assessment about my lad, which concerned me greatly - but probably best I not comment further on this thread but elsewhere.

jlo

If you read on disabled people I've aired what's happening to me regards funding I'm not lying I'm telling the truth. have a read let me know what you think? if it helps other people I'm glad I've shared my opinion & experience 

Grahamb

I'm afraid the lack of respite is a problem that cannot be solved in the foreseeable future and we have a similar situation.

Our daughter, who has always lived at home with us, is 41 years old, has Down's syndrome with autism and severe and profound learning difficulties. She also has a progressive congenital heart defect which causes her to have hypoxic seizures. She is also deaf with no speech and has recently lost her sight due to inoperable cataracts and needs support with every aspect of her life. She also needs use of an attendent wheelchair as she has limited mobility.

Since losing her sight nights have become difficult for everyone of us. She regularly gets out of bed after 2-4 hours sleep and shuffles around and out of her bedroom and cannot be persuaded to get back into her bed. As a result, we are now having to spend alternative nights sitting up with her in the living room to keep her safe. Sleep deprivation is increasingly hard to cope with, and as we are in our 70th year we need to set up some sort of future care for her when we are unable to do so or she outlives us.

Respite has been attempted throughout her life but never been successful due to her complex needs. She does not settle in unfamiliar surroundings and becomes distressed and can be aggressive. She currently is supported at our local day centre by 2 support workers for two 2-hour sessions a week when she is well enough to attend and this cannot be increased.

We have another meeting with our recently designated care coordinator next week to try and get some care for nights but we don't think anything will have been sourced (and this is 3 months since we asked about help!). They may promise to do something but we doubt it as our daughters needs cannot be catered for in our area. Watch for an update!

jlo

reading this has made me feel so sad I'm speechless.how you cope is amazing. how you can be left like this is disgusting. have you Told your story to the papers as everyone needs to know how much help you need & there would a public outcry over this I'm sure. 
where abouts do you live please?

SteveE

Grahamb said:

I'm afraid the lack of respite is a problem that cannot be solved in the foreseeable future and we have a similar situation.

Our daughter, who has always lived at home with us, is 41 years old, has Down's syndrome with autism and severe and profound learning difficulties. She also has a progressive congenital heart defect which causes her to have hypoxic seizures. She is also deaf with no speech and has recently lost her sight due to inoperable cataracts and needs support with every aspect of her life. She also needs use of an attendent wheelchair as she has limited mobility.

Since losing her sight nights have become difficult for everyone of us. She regularly gets out of bed after 2-4 hours sleep and shuffles around and out of her bedroom and cannot be persuaded to get back into her bed. As a result, we are now having to spend alternative nights sitting up with her in the living room to keep her safe. Sleep deprivation is increasingly hard to cope with, and as we are in our 70th year we need to set up some sort of future care for her when we are unable to do so or she outlives us.

Respite has been attempted throughout her life but never been successful due to her complex needs. She does not settle in unfamiliar surroundings and becomes distressed and can be aggressive. She currently is supported at our local day centre by 2 support workers for two 2-hour sessions a week when she is well enough to attend and this cannot be increased.

We have another meeting with our recently designated care coordinator next week to try and get some care for nights but we don't think anything will have been sourced (and this is 3 months since we asked about help!). They may promise to do something but we doubt it as our daughters needs cannot be catered for in our area. Watch for an update!

Thanks for that, @grahamb What a tale! Another shining example of intense, continual parental love that never, ever stops. Even when the support does. I do hope something comes from the meeting with your care coordinator. (I note you say "recently appointed care coordinator" and I wonder if you can explain how this appointment and role came about because it is new to me - no such role whereabouts). Thanks again.