Hi , I am really shocked by a phone call from Mencap who my son has been having 6 hours support in the community on Saturdays to attend a sports club and lunch out .
The new manager who rang , informed me that my sons support has now been terminated as they didn't want to support him as we live too far away .?? It takes 18 /20 minutes to get to our house ?
My Son has been having this support from mencap for over 10 years . This new manager has never met him .
The way it was said was very cold matter of fact that his support will terminate at the end of January as they have to give notice .
My Son has very little understanding and very little speech , he really enjoyed going out on Saturdays .
I am so disappointed with Mencap as I thought they had all Learning disabled people backs , after all if we can't turn to them who can we?? and the cold uncaring attitude of this new manager about my sons support really upset me.
His support workers were always good with him and he enjoyed thier company so I dont think it's a problem for them .
They charge the highest rate around for support plus transport costs which he pays from his direct payments .
I know agencies are struggling to get support workers , has anyone else having trouble with support , ?
My Son lives at home with me so needs community support to give him a life, sadly he can't go outside the door on his own, he is 37 yrs old , there is just the two of us now since his dad passed away.
Written by
Tracidu
To view profiles and participate in discussions please or .
We are sorry you have had this experience. We want to learn from this, so to help us understand what's happened please could you fill out our complaints form on this page: mencap.org.uk/feedback
This will start our formal process and allow us to look into all the concerns you have raised and treat your situation seriously.
So sorry this has happened to you and your son after all the difficulties you’ve experienced through Covid. It just gets worse. I hope Gareth from MENCAP is able to help it’s just not on !! Keep us posted.
Thankyou for your reply 49 Twister , I will be in touch with Gareth . I feel this sort of thing should be reported to highlight exactly what is going on .. I will keep you posted , I'm not expecting anything to change?
This sounds like a very cold-hearted and unprofessional way to make changes to your son's support package from Mencap. I hope you manage to resolve it quickly as it is obviously a very stressful situation to face both for your son and for you. I must say that when we first starting receiving a budget for support for our oldest son, Mencap were unable to fulfil the hours we needed and so we very quickly changed to a provider who could meet the requirements. And this was about 15+ years ago, so well before the days of staff shortages and difficulty with recruitment, and left us feeling disappointed with the most high-profile provider at that time. good luck.
Thankyou for your reply , I have recieved an email regarding the post I recieved from Gareth from mencap to fill in a form .The message I recieved back said that the Mencap agency I use for my sons care is not Royal mencap but a separate company under the mencap banner , they have thier own rules which I was aware of.
They are under Mencap so I said they are the go to place for the Learning disabled and hoped they would care and have empathy with LD and felt the attitude and lack of understanding from them was a complete shock .
My Son goes to day centres in the week , I have always tried in his 37 yrs to get him the best life I can , all agencies have staff problems which is very worrying for all LD 's future .
Mencap agency pay support worker low wages and they have to use thier own cars and and pay public liability insurance so care in the community is harder to provide as support workers would rather be in a building based unit as I see it ?
I just wanted to high light the situation and hoped Royal Mencap would speak up about care providers and LD more .. I do realise not all LD have unsuccessful support but the ones that don't get it need to have someone to speak up for them . When care is mentioned in the media its always about the elderly and carehomes which do need highlighting too , but LD very rarely get mentioned ., sorry for the rant ..
I hope you are able to get the care replaced, I too live in the countryside 15 to 18 mins from the nearest towns, so it is always difficult to get carers as they also have to use their own cars to take my son out. I'm so lucky we have a girl who lives near us; The support is so important to you, its scary and sad times we live in, a little kindness goes a long way and they absolutely need to know the tremendous impact this has on both your sons life and yours. I truly hope they reconsider, as you say its been running for 10 years so what has changed exactly??? xxx
Thankyou for your reply , Mencap agency has been there for many years , it is still open but not unfortunately for my son , I cant see them changing thier minds about his support . It's going to be very difficult in my area even though its a town to get someone to replace the carers I had , . When his care assessment was messed up on his last review by an out of area social worker who rowed with his local agency over something that had been working OK for years , she had to go out of area to get support for him to go to his daycentre 2 days a week . It's been a horrible stressful couple of years ..... .thanks again for reading
hi Tracidu your son is definately not on his own sadly ive known it hapen to other people.
so i used to be supported 2-1 full time by the national autistic society outreach team when i lived at home with my parents plus when i lived in a couple of council based residential homes who found me to complex and challenging,they had a service car although when it was being used the support staff did use their own cars and they all had to get business insurance-at least im gessing so because ive been told that here.
anyway,the reason i say all this is because i found out a couple of years ago while at a disability expo, a high up NAS insider who i was good friends with told me outreach was no more (im gessing they ment in manchester or the north west) as outreach had taken on to many smaller contracts (like your sons for example) and not enough full time contracts bringing in the funding-many people had had a few hours a week spread over part of one day and that was it, and priority for staffing went to people like me who had 2-1 full time support needs, looking back i find that very sad because it meant canceling the shifts without notice for people who were on part time contracts 1-1.,even half of my 2-1 shifts were canceled without notice sometimes which woud trigger major meltdowns and it was definately setting me up to fail (as it did).
the staff were stressed as they were being left to support people more challenging than myself-many who shoud have been protected in secure residential and never on outreach,ive seen life changing (to staff) sexual abuse from service user towards staff because certain 2-1 service users were being left with 1-1, the lack of staff in disability care goes very deep and has been going on for many years longer than what we see reported on tv,its easy to sum up care work staffing-its dedicated empathetic staff, (whose dedication is taken advantage of by bosses and they eventualy burn out) ,young social worker students who dont stay for long or the uncaring staff who want quick money who bother with care because the wages are useless.more funding is needed clearly.
im wondering if the local mencap organisation that your son uses have introduced a vacination thing where carers have to have had the two vacinations to work for them,and this might have led to even shorter staff?
its happened with my facility,we are really short staffed,they use agency a lot for me when they were told by social services and a learning disability hospital this is setting me up to fail,and the only staff to start working with me in recent months was a waking night staff who got sacked within two weeks because of being everything from neglectful to causing sensory overload everytime day staff left my place and taking advantage of me-stuff she shoud have been put on the POVA list for.
i do hope your son is given permenant staff as soon as possible but theyre being really bloody cheeky and relieing on you to do everything,as they see you there and the day services and think thats all his needs and wants met,as well as yours. sorry for waffling on as usual and best of luck with this,i hope he gets some amazing and hopefuly staff that stay!
Sorry to read your post but not surprised. I am on my own, aged 71 and looking after my bed ridden daughter who has a LD and had her feet and hands amputated after sepsis. I was getting support from Mencap in the evenings to feed her and give her some companionship. That was stopped just after the pandemic started. They are always short of staff because the pay and conditions are really bad. Mencap do not care about people with LD despite all their adverts and pleas for donations. Social care seems to be aimed at the elderly and even agencies aren't keen to work with LD. I have taken on the budget myself and advertise for staff privately using Penderels to do wages etc. It may be worth trying that to get the help you need. My heart goes out to you xx
Thankyou so much for your replies , I am so sorry to here your experience Edna31 and LDaudtie.I think you both hit the spot on all this , it's a very worrying situation . I think when direct budgets came in, Social services washed their hands of any responsibility of care providers and left it to family members /carers to source support . Therefore any problems falls in our court , I wish we didnt have to rely on support at all to get him a life outside of our home , I do all of his personal care myself but as he is a grown man and I am not going to be around forever I am really worried for his future . I know I have to look harder now for a placement for my son and know I should have done it earlier but he is so young in his mind and loves his home it's been put out of my mind at times . Never gets any easier unfortunately .
Hi There. really sorry to hear what has happened and the way it has been handled which is nothing short of derisory, it is o;h so simple for L/A's to use the term :Duty of care. But in recent months the goalposts have been moved under their own procedures, protocols, and finances prime example client cont , which is not pro-rata so it does not matter how many hours cover the respective person has they still have to pay the horrendous figure of around £93 per week depending on how their financial assessment is worked out with daily and weekly costs.
Yet we are now fundamentally staring down the barrel of a gun with no powder, as the system is now breaking down , carers are now not returning to the industry either from furlough, or laying off or through covid itself and they are now realising in their thousands that actually they can get better rates of pay without the pressures stacking shelves in Aldi or Lidl ( not that there is anything wrong with that form of job)....there are i believe, now almost 200.000 vacancies in the care sector.
Hi, yes it's all very worrying . Carers wages are appalling and the hours are dreadful so no wonder they are leaving the profesion. Unpaid carers allowance is a pittance and if you recieve a state pension which is all I have coming in, or if you earn over £128 per week you can't claim CA .
I have written on occasions to my mp about the state of the care sector , all I recieve back is a generic letter to say money is going into the sector , if this is so who is receiving it and why is it falling apart ???
This is so worrying, the feeling off no one giving a thought or care is very over whelming at times , I for one have never felt so scared for my sons future in all his 37 yrs . Its exhausting.
Absolutely and with the greatest will in the world what is needed is a massive countrywide continuous protests i feel this will be the only way to get these authorities to listen, and i feel it should be up to orgs like mencap and the like to spearhead this on behalf of us all who are struggling in the situation, people say "oh yes i understand " which immediately says to me "NO YOU DONT , YOU DONT HAVE AN INCKLING OF A CLUE".
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
visiting my son.
My brother's hours at supportive living
Worried about family who live in a mencap house
My son has been badly let down by Adult services 
Exploring living options for my adult autistic son particularly HOLD scheme 
