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Charity Begins At (Care) Home

July 28, 2015

For thirteen years I worked for a counselling charity. A very small, local charity. I won’t name them in case HMRC are reading. The 25 or so counsellors had to be self employed. We had five counselling rooms, provided rent free by the church who also gave the charity an annual grant. The counsellors received a fixed sessional rate of pay. The tricky bit was what the clients paid us. We had to call it a “donation”. It was drummed into us that we couldn’t use words like ” charge” or “fee” or “payment”. Trouble is that the word ” donation” suggests flexibility and choice. Whatever you donate could vary from one session to another and in fact, you could chose not to donate anything at all. Of course, the reality was nothing like that and as times got harder, we could only accept clients who offered a donation starting from £20.

What’s my work history got to do with anything? Yesterday, the CQC published an inspection report of another care home being given an “inadequate” rating. My eyes were drawn to the report because the home is in Hillingdon. The first shock was that the home was run (owned?) by Mencap. I didn’t know that Mencap run care homes. In fact, they have 130 across the country (that doesn’t include supported living) and have 3 in Hillingdon. The responsible individual for all three local properties is Janine Tregelles. I only mention that because this is the same Janine who regularly teams up with the Challenging Behaviour Foundation to issue a condemning statement whenever a scandal in the social care world breaks. Here’s a flavour:

“Mencap & the Challenging Behaviour Foundation call on the government to urgently address systemic failings in the care of people with learning disabilities” (4.9.2012).

The CQC report makes for dreadful reading. I sat there with tears welling up and a boiling rage. I just want to focus on one of the failings because I think it’s the perfect illustration of the chasm between the presentation and the reality. And sadly, I think it demonstrates the impoverished lives lived by the residents in a place run by a charity that proclaims to be “the voice of learning disability”. The CQC noted that the care plans of the four residents (the service can take up to five people) showed that they needed 2:1 support when they were out and about in the community. The staffing records show that between 7am and 10pm each day, only two staff are on duty. The figures don’t square up. If the two staff on duty took a person out, the other three residents would be left home alone. The ” activity ” records reveal that during May, one resident went out five times. For 26 days in May, he had to stay indoors all day. Another resident went out 7 times, although three of those trips were to do the house shopping. One resident has on their person centred plan that he loves going bowling but a staff member interviewed admitted they can never take him because there aren’t enough staff. It’s just so fucking depressing. I checked the CQC reports of the other two Mencap care homes in the borough and the staffing levels look exactly the same. 15 learning disabled people in three placements (you can’t possibly call the places a home) confined because the country’s “leading learning disability charity are unwilling to adequately staff its services. Needless to say, there were no DoLs authorisations for any of the people in the inadequate Precinct Road care home.

Click on the Mencap website today and you’ll see it is splashing its annual Dodgeball Day (Tickets at £27.50 plus booking fee). What chance have the poor sods who live at Precinct Road got of going to a Dodgeball Day? If they’re very very lucky, one of them might be able to pop out to the newsagent to buy the house milk.

I don’t understand how the business, erm sorry, charity works. Presumably Hillingdon council Commissions Mencap to provide this service. Do they give them a donation? Once commissioned, do they just leave them to get on with it?

In the Mencap accounts, it records an income of £175m and 80 to 90% of that income (donation?) comes from central or local government contracts.

It’s easy to see why Mencap want to cosy up to Bubb and his buildings based plans to get people out of ATUs. More ” donations” to the Mencap coffers, regardless of the type of lives its clients will end up living in a Mencap service. It makes all the press releases from Mencap & CBF ring a bit hollow. Oh, and by the way, Mencap issued a statement about the Precinct Road report. Without the CBF. Harold without Hilda. There were no trumpets. No calls on the government to act. Just a rather grudging Apology with extraordinary language like “Mencap is committed to enabling learning disabled people to live the lives they chose to live.” They chose to live? Doesn’t seem much choice at Precinct Road. It’s bastard, not our fault guv, language. From the leading charity that gives learning disabled people a voice.

Wouldn’t it be great if those four people at Precinct Road had a voice and said: “Hello Mencap. We would all like to live our life as we chose and go to your Dodgeball contest today”.

Words and actions. The void.


From → Social Care

  1. twittleyjules permalink

    Well said Mark.

  2. Jayne knight permalink

    For the homes being run like this and making people’s lives such a misery they had better get things sorted quickly. If I was at the top of that tree Id be down there now and for for the next 12 months in there, listening. doing, walking the talk and getting it right. Too much talking and no rolling your sleeves up and doing is pointless to the poor buggers that make your job a possibility and pay your wages. Do they even know who runs their service.? I was a CQC responsible officer for Ling for 30 years. We never had an adverse report. No person working for Ling got paid for sitting on their arse. You worked with people regardless of your job. Our finance manager or me did sleep ins or support if we were stuck. It takes real commitment from everyone. If you can’t help people and care for them to have a good life just don’t do it. They have enough weight on their backs without you adding to it.

    On previous points
    I really agree that you should not be a campaigning organisation and provider of services. You are one or the other. One of the ways to change campaigning groups is to pressure and join them. There are two Trustee positions open. Why not apply with that agenda ? It would make for an interesting application, interview and eventually a new organisation!
    Mencap should in my view concentrate on campaigning and let a genuine person centred people with disabilities and family led new charity to develop and run fantastic services quite separately.
    If that service wanted to it could donate profits to campaigning and reinvest them into practical ways of making lves better.

  3. frannie permalink

    So depressing,Families try to plan to get the best for loved one accounting for every penny, in good and stressed times, fear of money being taken away, in efforts provide and put in support as for a ‘normal life’ yet leading organisations seem to get away with empty words, providing substandard care, non lives and preventable deaths. Be honest admit it is not working, you have got it wrong, this is making money, little thought for the poor resident, client, patient…loved one on the receiving end and the underpaid support workers who cannot possibly do much and has little influence,let alone job satisfaction or progress, and often all at a cost several thousand pounds a week to the tax payer!

  4. weary mother permalink

    Mark, in my experience the only things that are monitored are the contract cost and head count.

    I asked CQC what responsible monitoring (of contracted care and support services) by a LA should look like.

    This was post my getting (pretty recently) a very grumpy non response from LA when I asked them how they monitored care and support in their commissioned services. From a subsequent similarly ‘unclear’ response from CQC, I concluded there does not seem to be any tangible mandate on LA to consistently monitor care and support. The LA, in my experience, only visited care and support post complaints. And then very reluctantly. They kept (keep) referring obliquely to my responsibility to do this in spite of the ‘supported’ living services for my adult son being directly commissioned by them/LA.. (Declined direct payments. ) Other LA’s may be doing this differently/better?

    • Another weary mother permalink

      Weary mother, I was told, “we don’t have time to monitor” and instead of saying thanks when I flagged up e.g. No manager but you’re paying for one I was told it was “my opinion” rather than acknowledge it was fact!!!

  5. nic permalink

    completely enlightening post. I have always believed mencap was a charity, pure and simple. As young children we were reminded that it was ‘proper charity ‘. I can’t get my head around the staffing levels , I am only familiar with my LAs opinion of 2:1 support out and about. In 2010 it was that it didn’t fund it, if you wanted to leave your home you organized informal support or pooled some of your DP for ‘shared care’. In the same year, so it may no longer be the case, my daughter was advised shortly before she achieved a tenancy that she should consider living in a cul-de-sac of ‘ peers’ all ” wheelchair bound “. The lifestyle on offer was that of ” someone collects everyone’s shopping list at the same time, and that saves time and money “. Unbelievably the suggestion came from a neuro physio whom my daughter believed supported her in her desire to regain her independence. I apologize for accusing you of using clever speak, I had heard of safety fellows and such shite, never thought anyone would bother to parody them but that is just my opinion.

  6. The ironic thing is Mark – they will probably spend more on the PR and the crisis meetings that they hold to manage this shambles than they’ll actually spend on putting things right.

  7. Shirley Buckley permalink

    Mark can someone find out what the fees are per week. 2 to 1 support 24 hours a day 7 days a week. Do we calculate at £14 hour per carer (not paid to the carer of course) about £5000 a week? Thats the going rate minimum

  8. well done for flagging up the propa ganda machine.

  9. That’s so sad to hear. If they need 2:1 outside the placement, what do they need within it? 1:2 doesn’t sound great especially if one is off helping someone with an issue, leaving 1:3.

    I tend to think that for everyone’s safety – including the safety of the staff – that there should be a minimum number of staff in these placements. Maybe three. Whether there are 2 care users or 20, a safe working minimum. *IS* there one, and if so, what is it?

    And why the fuck are these people held to ransom in their placement? Unless it’s a “home” for people with agoraphobia, I bet they’d love to get out. To choose a birthday card for their mum. To go bowling. To do anything that other people can do. They’ve committed no crime but they’re locked inside.

    I know charities are (generally) squeezed for cash. But surely they could offer an apprenticeship or internship to up their staffing levels, there must be some dedicated young people who want to go into a career in care who could boost the numbers?

    Damnit, I’m angry too now! But I’m glad you flagged this, Mark.

  10. Pauline Thomas permalink

    Charities were more successful in ensuring good care from the LA’s/government when they acted like ‘unions’ for their members. Complain to Mencap about shoddy services and they were on the case. LA’s respected their judgements and complied with their wishes.

    Not so now. What do the big powers do when they are being beaten? They take the troublemakers on side. Funding the big charities kept them obedient. It stopped them rocking the boat too much

    Nevertheless some community schemes and activities that are run by the local mencap societies are really good. They are a godsend to many carers and their loved ones.

    It is the big Royal Mencap that it is growing into this huge monster. To actually have its website filled with such drivel about ensuring people with learning disabilities have rights and autonomy when the reality in its own run homes is the opposite. What hypocrites.

    • weary mother permalink

      It could appear that all the corners are being neatly tied Pauline. Other large organisations/businesses compete and are contracted by LA’s to deliver both advocacy and brokerage…….etc. Independent advocacy looks … like….?

  11. Cathy H. permalink

    This is probably the saddest thing I have read in a long time.
    If the “charities” who are supposed to be on our side,
    are secretly in the governments pocket, then where does that leave the people who need help from these charities.
    We live in a seriously messed up world.

  12. Thank you for your post. Thanks for speaking out out what going on. This is why disabled peoples movement continues to campaign against the institutionalisation of our people and multi million / billion companies like mencap and Cheshire foundation making money out of their misery. Free our people!

  13. Mum permalink

    Inspect the commissioners – cannot argue with the dreadful care mencap have given – but there is a wider welfare context and a deeply unpleasant smell in the commissioners offices. Equally they want care delivered at unsustainable rates – that are little more than meagre donations – after all this is welfare – our children are on welfare – this is what welfare looks like in England today. It does not excuse mencap for not doing their jobs properly. Anger is sending me purple. It is also about snobbery, not listening to those who do. People who do things well vs those who think they are strategy. It’s also about people who have not wanted to drill down when others have said new things aren’t working for us. Why was the Liverpool Care so successful when it was first used – but so bad when it rolled out? The same for the new care landscape. Good ideas abused – but saved from scrutiny because people have been unwilling to sufficiently try and understand why it isn’t working for everyone. Afraid of losing their own vision. The vision is being destroyed. No doubt misapplied – but to expose that misapplication you have to be able to scrutinise, talk about shortcomings and repair.

  14. weary mother permalink

    I agree.

    The whole care and support ‘supply chain’ is at best, ‘faulty’.

    Across LA’s and NHS commissioners make decisions based on judgements; can hire the best or cheapest assessors to convert needs into services, or cost free ‘wants’.

    Historic firewalls and or valued relationships between professions/als, may or may not include family members in judgements.

    LA’s etc can hire providers who are competent or not.

    LA ‘s etc can carefully monitor contract promises …….or not.

    Public Commissioners can deliver Statutory requirements, or not; are accountable for their mistakes. Or not.

    LA’s etc learned that aggressive defence improves nothing, and promote their best and manage the bad ones out. Or not.

    Strong links in the care and support chain …….or not.

    Not ‘rocket science’ (As stated recently by a man with learning disability)

  15. Pauline Thomas permalink

    Weary Mother you have hit the nail firmly on the head. I can only hope that when my son leaves our home in the very near future that we all get it right for him. I am terrified of the ….or not.

  16. weary mother permalink


    ask others in your locality how they have accessed sufficient safe care? Ask them which agency appears most consistently accessible and competent. Some LA’s are much better than others. but be prepared to constantly monitor your sons support. Be prepared to always check that agency and commissioners/care manager are sharing support information, and that agency has received the contract/payment advice to intervene when emergencies occur. Care plans do not usually include agreement on who does what support looks like in emergencies. Make sure health care support , how (who pays) and when, is covered in care plans. If it is not seek advice. There are tug of wars over who is responsible for supporting access to health care, LA/NHS, in some areas.

    Find out, in advance, where you can access legal aided legal support for your son if it becomes necessary.


    • Pauline Thomas permalink

      Thank you Weary Mother for your advice. At this moment in time my husband and are so burnt out and weary. after 5 years of caring 24/7, that we cannot think straight.

      He is not the son who used to brighten our lives anymore. Many things have made him this way. Lack of good day services or long term use of epilepsy medication? Either or both could be the culprit.

      I used to be thankful that my son had been born just after the government brought in mandatory education for disabled children. What on earth did families do before 1971. I used to be thankful that he could go and still be with his friends at a day centre when he no longer was able to go to school.

      Day services in my LA are dangerously inadequate. Mental illness among people with LD has risen dramatically since the closures of day centres. (FOI obtained in 2011 showing the rise in referrals to the mental health team since the closures). We have, in truth, taken a backward step into the dark ages when it comes to looking after the well being of people with LD.

  17. weary mother permalink


    some LA’s have been very cruel in the cuts they have made.

    My days are fully occupied tying the ends in my sons support, and fighting to hang on to current support etc, although the LA commissions his ‘independent supported’ care. Care plans take months to appear after review. His weekly care charges are huge, have just been jacked up scarily. I have no idea if they have been assessed fairly. Life has been one grinding slog after another just to tread water..

    if you are deciding to help your son to live elsewhere, whatever that means, ask for a new assessment by LA; find out what (and how) they will support you and your son.

    And if you feel this assessment will not keep him safe (happy and healthy would be good too?), as his advocate find a legal aided solicitor. Only when you have taken advice on his Statutory rights will you be able to make any informed decisions. Another slog with diminishing energy…….?

    Like you I have been doing all this for far too long? And I too am so very weary….

    My very best wishes …..

  18. weary mother permalink

    Have strayed a bit from your topic here? Many thanks.
    Is there any way I can let Pauline have my email address through you?

  19. Pauline Thomas permalink

    Weary Mother you can contact me on

  20. Reblogged this on rosemarytrustam and commented:
    At the centre of this CQC do judge the staff as kind but one wonders whether the problems identified are a function of too large an organisation trying to be too many things. It certainly appears as if it hasn’t managed to advocate successfully for the needs of these service users with the local commissioner. Needs identified are not met with sufficient staff support. One suspects this to be function of LA cuts – BUT Mencap should know enough to ensure the commission meets needs as is the legal requirement. The Q raised here is one that should be considered. Can an organisation effectively run services but also be a campaigning charity for people? Certainly its credibility as spokesperson for the sector has to be seriously undermined when it is found to be running a service now put on special measures by CQC… and whilst there are few perfect services, Mencap can’t afford to have such imperfection given its role. Does it need to run services? If it does they will need to be excellent surely?…/we-need-to-talk-about-m…/

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