Hi
I wonder can anyone help?
Our Son has Autism, Schizophrenia, OCD, his brain was damaged at birth, he has CVS (cyclical vomiting syndrome) where stress makes symptoms far worse, he’s had a stroke that has affected his eye sight, hearing, balance, speech and his bowels (needing to rush to the loo when he can’t rush) and has soiled himself numerous times.
We are so stressed and are concerned how our Son will cope; meaning with the stress of it all and how this will affect his mental health. He talks of suicide most days and has tried to take his life a number of times.
We are both in our 60’s and can’t manage to go all that way and our Son would never be able to find his way alone or cope with the logistics of going so far! Also he’s easily manipulated so this would be out of the question!
I cannot tell you how we feel! We are so stressed by it all and very concerned for our Son.
My Husband has had heart surgery in 2014 and although he copes he has never been the same and I am concerned for his health too!
We filled the form in and have given all the information that we feel pertinent enough so that they would understand but it appears they have ignored all of what we have explained to them!
We ask them to come to our home and do a home assessment so that our Son would feel less stressed but once again all of this appears to be ignored.
We were treated abominably at my Husbands assessment and were given the smallest award possible and due to our Son having a stroke 6 months after my Husbands heart attack I was so physically and mentally exhausted that I did have to strength to appeal.
Thanks for listening.
Regards
Can you be a bit more specific about what is happening please?
Is your son in residential care now, 40 miles away, or is he about to move into residential care 40 miles away?
Is he funded by Social Services or NHS Continuing Healthcare?
Have you and your husband had Carers Assessments?
Hi H.
A " Caree " assessment ?
A new term for me.
Perhaps a Needs / Carers assessment carried out by a LA ?
( Usually conducted at the caree’s / carer’s home. )
Even a PIP assessment … carried out by disability assessors as agents for the DWP ?
( Which might explain the distance involved. )
Problems with husband’s assessment ?
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We were treated abominably at my Husbands assessment and were given the smallest award possible.
I assume a PIP assessment ?
First application only produced a lower rate award … no appeal to date ?
No advice sought following the assessment … from the CAB perhaps ?
Please clarify.
Hi bowlingbun and Chris
Thank you both so much for taking the time to reply.
Its an assessment from DLA to PIPS for our Son who’s our Caree.
Our Son lives 10 minutes away from us so that we can get to him day or night or for emergencies.
In the area where we live, many people had their personal budget stopped due to government cuts and we were one of them. So we do have a carers assessment but no monetary help. Also our Son can’t cope with strangers, so there is very little help available to us!
My Husband had a PIP assessment in 2014; I struggled to get my Husband to assessment due to weight loss and weakness after having a quadruple by pass after heart attack and 7 weeks in hospital. We were treated abominably by a young male and I posted our experience here at the time.
After taking advice from the CAB, I went over the assessment and award and explained every part of the award that I thought/knew was wrong. I waited for 3 months for a response and they explained that I would have to appeal. Our Son had a stroke and due to all the stress of it I didn’t appeal, so I know that we were given the wrong award and we lost a lot of money!
I hope this answers your replies.
Thank you
Thanks H.
1. Son’s PIP assessment :
A copy of a previous reply on a similar thread where distance to travel was a factor :
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**_A couple of external forum posts relating to location for a PIP assessment … what to do :
**Discussion: Error - Rightsnet
https://www.benefitsandwork.co.uk/news/3204-how-far-were-you-asked-to-travel-for-a-pip-assessment**\
Turn2Us on the subject :
**https://www.turn2us.org.uk/Benefit-guides/Claiming-Personal-Independence-Payment/Go-to-PIP-medical-assessment**\
MIND … 245 search results when it comes to PIP :
https://www.mind.org.uk/search-results?q=pip**_
2. Husband … PIP appeals … Turn2Us on the basics :
Challenging a PIP decision - Appeal to Tribunal - Turn2us
Assuming a Mandatory Reconsideration Notice has NOT been issued ( One month to appeal ) , I strongly recommend reestablishing contact
with the CAB to take the process forward.
Not many reading this post can afford to potentially lose monies by not appealing !
( £ 28.95 per week difference between the lower and enhanced rares ! )
3. Son’s care
Others will be alone with more experience in his day-today caring needs.
Suffice to ask … what external care is he receiving ?
Needs and carer assessments upto date ?
CHC / NHS Continuing Healthcare a factor here ?
Benefits … DLA mentioned … I assume housing benefit as well … any other benefits currently being paid ?
If he lives alone , a 25% deduction as a single occupier for Council Tax purposes ?
4. Your and your husband’s health
Need any help from us there ?
Would an advocate be of assistance to you when dealing with the LA ?
Hi Chris
Thank you for the information I will read through this after I’ve replied here.
It was 2014 when we first applied for PIPS for my Husband. It is far too late to do anything about my Husbands PIPS. He has had PIP assessment since at home and he still receives some money; so that helps us at least.
I didn’t appeal due to the stress of our Son being hospitalised after having a stroke; I just couldn’t think straight, despite the fact that we really did need the money. We had already paid £125 for our form to be completed for us and we feel we didn’t get the right information or enough support; so felt like the people we used were useless. It was only after that we contacted the CAB.
Our Son doesn’t have any outside help at all! We have cared for him from age 11. He can’t cope with strangers, so my Husband and I and our younger Son all take care of him. Our younger Son takes him out once a week so that my Husband and I get a break.
We have a Carers assessment about every 18 months to 2 years .
CHC/NHS Continuing Healthcare a factor here ? Sorry Chris not sure what this is and the question below either, don’t know what LA is???
Would an advocate be of assistance to you when dealing with the LA ?
I wonder as so many health issues have been causing difficulties. Would you consider contacting you MP. Some do an amazing job and have direct lines contact numbers for DWP.
https://www.parliament.uk/get-involved/contact-your-mp/
Given you experiences to date I feel you need to go beyond the normal lines/agencies.
There is no way you or you son should be travelling this distance. Given all the medical issues you as a family are experiences.
I contact and speak with my local MP on many different issues. And hand on heart he has been amazing.
Thanks H.
Ill keep this reply brief :
CHC / NHS Continuing Healthcare … MAIN thread :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998
Sections colour coded to assist navigating through it.
In theory , a 5 star NHS nursing care service that is FREE at the point of delivery … if one qualifies … delivered either at home or in a nursing care home.
LA ?
Local Authority … in particular their SS … Social Services department.
Social services advocate :
Someone to speak up for you (advocate) - NHS
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Someone to speak up for you (advocate)
If you find it difficult to understand your care and support or find it hard speak up, there are people who can act as a spokesperson for you.
They make sure you’re heard and are called advocates.
For example, they can help you :
understand the care and support process.
talk about how you feel about your care.
make decisions.
challenge decisions about your care and support if you do not agree with them.
stand up for your rights.
They can write letters for you and attend meetings with you.
Advocates will support you during:
assessments.
care and support planning.
safeguarding and reviews.
Advocates are independent of social services and the NHS.
( For once , written in plain English ! )
Your son’s circumstances … 5 / 10 years down the line ?
Time to think ahead … not a pleasant prospect but … it’s relevant.
Others will be along … hopefully to expand on the other points still outstanding.
Dear Chris
Thank you so much for all this information; I will look through it in detail tomorrow morning. I wish I would have had all of this information to hand in 2014 but I have it now and it will help in this process we find ourselves in and for the future.
My Husband is going to phone the office tomorrow and explain why a home visit is necessary. I’ve made a list to help him as we are both so very stressed right now.
So kind of you to take the time to reply.
Regards
Your welcome.
I’m back online around 8 am tomorrow morning … for another xx hours monitoring stint.
2014 … a lot of monies … probably in excess of £ 6,000 ?
CAB … can do no harm … and there is only an upside ?
Hi sunnydisposition
Thank you also for taking the time to reply; it is most kind of you.
We do have an MP’s office 15 mins drive away and I intend to phone them tomorrow morning to ask for their advice, ( if we cannot get a home visit re assessment), with a view to making an appointment to see her as soon as possible.
Thank you also for your understanding; it is such a comfort.
I will keep you all informed.
Regards
I’m really concerned that your son is getting so little help.
When did Social Services last do a Needs Assessment for him, and a Carers Assessment for you AND your other son?
A bugle call for that advocate , me thinks ?
I know it’s difficult to think about, but your son does need to get used to someone outside the family helping him, ready for the day when you and your husband are unable to care for him.
A good way of introducing someone new is to call them a “cleaner” and get them to do housework at his house, whilst you are there to supervise.
Does he live alone, or in sheltered housing?
Have you ever heard of a “Client Affairs Team” at your Social Services?
It might be worth contacting them, then they could manage your son’s money for him and make claims for benefits on his behalf, which would take a load off your mind.
When you are a multiple carer, not in the best of health yourself, anything that reduces your workload is worth considering.