Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Friday, 16 March 2012

Mark Neary: What price carer's assessments?

I am proud to host this guest post from Mark Neary (whose name may have a familiar ring to readers), about carers' assessments. Mark, Liz Jones and other colleagues in the Carer's Solidarity Group (FB) have been putting together a fascinating, but shocking, piece of research showing how much of unringfenced carers' grant money is actually spent on carers. Any carers reading this might want to know there is information about your legal rights available here, and I especially recommend this free guide (pdf) on carers and the law by Luke Clements and Carers' UK. If you want to read more of Mark's writing, you can purchase a copy of his book about the long journey to getting his son home here.
Over the past couple of years, I have become more and more interested in how the idea of a false reality (or false consciousness) that is prevalent in much of our lives today, has become such a central part of the adult social care world. Why is that when I am told “we are acting in your best interests”, does my reality feel that is someone else’s best interests that are being served. Why, when my son is asked to participate in the drawing up of his own person centred plan and must come up with a wish list, are all the items on his wish list rejected as “unsuitable or inappropriate”. Why, am I constantly being told that individual budgest are all about “choice and flexibility” and then discover that I have only one option for respite. Why, after selling me direct payments as “user and carer empowerment”, do I feel thoroughly dis-empowered?

Perhaps the biggest challenge to my perception of my reality is the issue of carers assessments. Mr Cameron, Mr Clegg and Mr Milliband have all spoken out about the “valuable role” of carers and how “we must recognise the role that carers play”. As this research shows, this is surely a case of words speaking louder than actions. But there is a cruelty too. By presenting the carer with the opportunity of a carers' assessment, an expectation is set up that the carer may be about to receive some respect and have their needs valued. A couple of months ago, the BBC published details of an Ipsos Mori survey for cancer research that revealed that 49% of carers receive no support at all. The BBC report concluded with the following quote:
“David Rogers, chair of the Local Government Association's Community Wellbeing Board, said: "As this report highlights, the sad reality is that many carers don't recognise themselves as such and fail to seek the support to which they are rightly entitled, and which is widely available through their local authority."
There is a double whammy in that statement: Firstly, it suggests that the fault is with the carer for not identifying themselves as a carer. Most carers that I come across know exactly that they are a carer. And, actually Mr Rogers it is the job of the authority to identify their carers and offer an assessment. Secondly, after failing to recognise that we are carers, we then make the secondary mistake of not knowing what support is available. Even, widely available. And it is that last statement; that false reality, that this piece seeks to expose and address.

In the last five years, I have participated in four carers assessments. They have been conducted by four different social workers (or carers champions, or carers services co-ordinators) but the script each time is identical. I have seen Blood Brothers four times, with Kiki Dee, then Stephanie Lawrence, then Linda Nolan and finally Melanie C in the lead role. Four different actresses but they all say the same lines and sing the same songs. A carers assessment works along the same lines:
“Would some counselling help with your burden of being a carer?”
“Possibly. I’m a counsellor myself actually but......”
“I can give you some numbers of some counselling organisations”.
"Will the carer’s assessment lead to some funding with that?”
“Er – no. But you can always ask your GP for a referral to the NHS counselling service....”
The outcome of these assessments (and they are usually a good 90 minutes long) is that I come away with lots of phone numbers; leaflets on the importance of a good diet and a good night’s sleep and ..... nothing else. On each occasion, I have brought up that respite might be useful but each time have been told, that respite isn’t part of the carers assessment remit – that comes under the caree’s needs assessment. (I’ve never understood that one; surely it is the carer who needs the respite)

Six months ago, I discovered that local authorities receive an annual carer’s grant from central government to provide services and support for carers. Across the country, these grants average about £1.7 million per council. My first thought upon this discovery was: where is the money going? I’ve heard stories of carers being offered free one off Indian head massage sessions; a free day’s horse riding lesson; even a weekend course in kite flying. But all these activities seemed small change when I found out the sums involved in the carers grant.

Around this time, I was invited to join an online group called the Carers Solidarity Group (Facebook). It was suggested that we make our first project an investigation into the way local authorities distribute their carer’s grants. The naive aim was to find out what money is available so we could inform carers of their rights and options prior to undertaking a carer’s assessment. We also decided to look at the outcomes of carers assessments to clarify if they actually produce anything concrete for the carer. The results of this research drive this blog post.

Freedom of information requests were sent to over 60 local authorities. I’ve attached two tables: the first showing how much of the carers grant is allocated to carers; the second reveals how many carer’s assessments produce anything worthwhile for the carer:
Carers Grants

The % figure shows how much of the carers grant was given to carers or carer’s organisations. The total grant is shown in brackets:
0% = Enfield (£1.585,000)
0% = Glasgow City (£429,000)
0% = Kensington & Chelsea (£936,000)
0% = Kingston (£500,000)
0% = Lewisham (£1,726,000)
2.8% = Bexley (£991,447)
3.4% = Wandsworth (£1,466,000)
6.8% = Durham (£2,836,000)
6.9% = Merton (£685,700)
8% = Hammersmith & Fulham (£1,419,000)
15.7% = Haringey (£1.405,700)
15.7% = Waltham Forest (£1,334,000)
17% = Bath & East Somerset (£2,809,085)
18.1% = Wirral (£1,585,500)
20% = Liverpool (£2,806,800)
21.6% = Islington (£1,444,000)
29.6% = Leeds (£3,528,170)
32% = City of London (£31,000)
32.6% = Devon (£3,654,000)
33.4% = Newham (£984,000)
35% = Northamptonshire (£2,807,000)
35.9% = Hackney (£1,853,000)
36% = Barking (£1,135,749)
36.4% = Barnet (£1,125,000)
38% = Harrow (£1,099,000)
38,7% = Cheshire East (£1,436,000)
41.8% = Greenwich (£1,676,000)
43% = Bradford (£2,691,000)
44.8% = Bromley (£1,291,000)
50.4% = Richmond (£681,000)
53.5% = Kent (£6,242,000)
55.7% = Knowsley (£1,071,000)
59% = Croydon (£1,666,000)
66.4% = Medway (£1,039,000)
66.6% = Sutton (£1,402,000)
69% = Ealing (£1,622,221)
70% = Surrey (£4,700,000)
76.8% = Norfolk (£4,600,000)
77% = Hillingdon (£1,054,956)
81% = Swansea (£787,100)
88.4% = Westminster (£3,866,000)
92.6% = Tower Hamlets (£1,425,500)
102% = Lambeth (£1,839,922)
The following councils refused to answer some or all of the questions: Essex, Havering, Hounslow, Manchester, Redbridge, South Bucks, Southwark, Windsor & Maidenhead
Carers Assessments

The % figure shows how many carers assessments produced either a weekly payment or one off payment to meet a carer’s need. The total number of assessments carried out is in brackets.

0% = Bexley (1170)
0% = Glasgow (773)
0.5% = Medway (707)
0.6% = Hillingdon (1236)
0.7% = Isle of Anglesey (414)
0.8% = Kent (20,820)
1.2% = Barking (2110)
1.4% = Hammersmith & Fulham (654)
2.8% = Durham (5040)
3% = Bromley (1705)
3% = Northamptonshire (884)
3.3% = Enfield (1292)
3.8% = Swansea (2053)
5.8% = Essex (8465)
6% = Barnet (1868)
7.7% = Bath & East Somerset (1462)
8.5% = Knowsley (1956)
11.3% = Kingston (935)
11.7% = Greenwich (1042)
12% = Norfolk (6724)
12.5% = Newham (864)
13% = Hounslow (802)
13% = Merton (1321)
14% = Liverpool (2450)
16% = Harrow (3094)
16.8% = Ealing (918)
20% = Bournemouth (920)
24% = Leeds (2584)
25% = Devon (4539)
26% = Croydon (766)
28% = Cheshire East (1579)
28% = Bradford (4245)
31.7% = Sutton (1027)
34% = Lambeth (1487)
36% = Islington (1115)
36.7% = Richmond (718)
51.6% = Lewisham (1472)
55% = Wandsworth (760)
58.6% = Hackney (685)
66.5% = Waltham Forest (430)
82% = Southwark (149)
91% = Surrey (1552)
99% = Tower Hamlets (486)
108% = Haringey (649)
128% = Manchester (2262)
242% = City of London (26)

We asked five main questions:
1. How much was your carers grant from central government for 2010/11?
2. How much of this carer’s grant was allocated directly to carers or given to external organisations with a remit of supporting carers?
3. How many carer’s assessments were carried out in 2010/11?
4. How many carer’s assessments identified a need that led to the carer receiving regular direct payments and/or a personal budget?
5. How many carers’ assessments identified a need that led to the carer receiving a one off payment to meet that need?
Before reviewing the results, it is important to acknowledge some flaws in the information we received:
1. Many councils have set up sub services with names like “Carers support centre” that have the initial appearance of being an external agency. Upon further investigation, we learned these were in house teams and money was siphoned from the carers grant to fund these teams in areas like staff salaries, recruitment, tendering costs. So, we feel it is a reasonable assumption that at least a proportion of the money allocated to these services probably didn’t reach the carer.
2. Some external agencies received substantial carers grant allocations for specific services they provide (e.g. respite, counselling etc). However, we discovered that often, these agencies will charge for that service which raises the question: what exactly are the carers grant being used for. For example, Norfolk council gave a considerable portion of its grant to Crossroads Care for respite services. However, several group members have reported that if you approach Crossroads, having been pointed in that direction by the council, you discover there is quite a large charge for the service. This has led service users to believe that a significant portion of the grant must be used to cover salaries, admin, accommodation etc. Further FOI requests to each organisation would have to be made to clarify this further.
Flaws aside, the research still yielded some valuable and shocking information. Here are a couple of bald statistics:
1. Of the 42 councils who responded, only 36% of the total carer’s grant they received was allocated to carers. (Bearing in mind the flaws mentioned in 1 above, this figure is almost certainly a lot lower. 64% of approx £54 million is not reaching carers.
2. Five councils allocated none of their carers grant to carers. The average grant is £1,375 million.
3. 26 of the 42 councils, had a less than 20% success rate in providing anything worthwhile for the carer following a carers assessment.
Sadly, it seems that carer’s assessments for a lot of local authorities are a tick box exercise. Take Hillingdon Council; in 2010/11, it carried out 1236 carer’s assessments, which on paper looks a very laudable achievement. If my experience is anything to go, that equates to roughly 1850 man hours. However, after spending all that time, energy and paperwork, only 8 carers benefited with a regular direct payment or one off payment. For the other 1228, their carer’s assessment must have been pretty pointless as the assessment produced absolutely nothing. (By the way, I’m due my next carer’s assessment in a few weeks and I’m determined to be number 9 and accept a fish foot spa that I don’t really want!) It is like the trick sell – we are meant to believe that the value is in having the assessment, whereas of course, any value is in whatever the outcome of the assessment.

Astonishingly, two councils, Bexley and Glasgow conducted 1943 carer’s assessments between them, without producing a single outcome. A big fat 0% despite getting a combined carers grant of nearly £1.5 million. I hate to be cynical but I’d wager that the Bexley’s carers champion has a very tastefully furnished office.

A note of caution should be expressed, even with the councils whose carer’s assessments seemingly produce a high level of practical outcomes for carers. For example, Southwark council managed to provide 82% of the carers they assessed with direct payments or a one off payment. However, in 2010/11, they completed just 159 assessments. I think it is a reasonable assumption that there are many many carers in Southwark who don’t even get out of the starting blocks and get offered a carers assessment.

Part of the problem is that often, carer’s needs are conflated with their caree’s needs when in fact they have two entirely separate needs. In my case, my son is being offered two nights away from home each month – this comes under a need identified in his assessment of “facilitating his independence”. To the council, this is respite, whether it meets my need or not. It would make more sense if the carer and their caree’s needs were assessed independently of each other.

Clearly, by far the biggest problem is that there is a lot of money being passed around that carers don’t even get a sniff of. Unhelpfully, the carers grant isn’t ring-fenced, so it is quite possible that the carer may be desperate for a break from caring but that break is unavailable but your city centre Christmas decorations look fabulous. Wouldn’t it be fantastic if all carers walked into their assessment knowing exactly how much money was available and they can cost a service that will meet their need. My local council received a carer’s grant of £1,054,956 in 2010/11. I have costed a reasonable respite package for myself at £3900 per annum. If I’m lucky, I may get it. If every carer reading this research uses the information herein, we may not be brought off with bingo evenings for much longer.

As I said at the start of this piece, we often hear platitudes from politicians, commending carers for the valuable job they do. In order for actions to speak louder than words, three things need to happen:
  1. Carer’s assessments must be taken more seriously. They cannot be a tick box exercise, used to justify a ideology or create a false reality that something of value may come to the carer as a result of the assessment. They must be meaningful. 
  2. Authorities must be more transparent about the money they receive and what is available for the carer. I’m quite capable of identifying my own needs and I’m even capable of finding and costing a package to meet those needs. The Authority can always say “no” to my proposal but at least, the process isn’t the covert process we find today. I might actually feel empowered. 
  3. A carer’s assessment must be seen as a valuable item in its own right, not just an adjunct to their caree’s assessment. The needs may overlap but too often, we are presented with the false reality of being helped, because our caree is being helped but in fact, we are receiving no help at all.


  1. Wow, things never seem to change - what do carers have to do to be recognised as the most important people in the lives of their carees?
    How much do they save the government and local authorities by just being there and 'coping' with the flack that gets thrown at them?

  2. A different analysis on the same topic, refer and

  3. I have had 2 carers assessments in which i identified that should I become incapacitated due to illness Husband would have no one to cover his needs, we still do not have a contingency plan. I fear my assessment is in someone's filing cabinet gathering dust. I have been left as 24/7 carer since 2009 with little or no support. Got to the point now that husband is going to have to go into nursing care home as I cant go on like this any more. oct 2011 entry explains background.

  4. Oh - how ironic. I got in from work to find a reply from Hillingdon council to my respite proposal. It's been turned down. Their position is that they only form of respite they will accept is Steven going back to the unit where he was unlawfully held for a year. I costed an alternative, which is having a carer stay overnight in our home 42 nights a year (that was the allocation we had before Steven was taken away). It would have come to £3900. Their argument: "It is not our practice to fund additional respite care elsewhere when the service is already provided and paid for by the local authority". Choice? Flexibility? Empowerment?

    1. Mark hi,

      Have you looked st funding from the 3HFund, The Act Foundation, disability grants or funding through HM Government Aiming Higher for disabled Children.

      Also you could seek a Judicial Review against the LB of Hillingdon decision and look to see what Impact Assessment LB Hillington is or is not in compliance to. With the Introduction of the Autism Bill 2009 and other related disabilities laws in the UK might get Hillington to overturn it decision.

    2. Hi Mark,

      I'm not a solicitor, so can't advise on legality of Hillingdon's decision there, but it does seem a bit *surprising* that sending Steven back to the place where he was detained would be in his "best interests". Your descriptions elsewhere of his ongoing trauma and fears of being removed again rather weigh against that.

      If Hillingdon were to say they would *never* fund an alternative service, which it is within their powers to provide, that would be fettering. And I think you and Steven have a strong argument that they should exercise their discretion to provide an alternative service. You've probably already considered this, but you can request a direct payment in lieu of respite services. I'm going to quote from Clements and Thompson's latest edition of Community Care and the Law:

      "...once a local authority has decided that services are to be provided, then... it can be required to provide direct payments in lieu of services: the relevant regulations being phrased in mandatory terms. It follows that it is unlawful to a local authority to have a policy of refusing direct payments for certain services (ie services it can provide 'in house' or via a block contracted service) or of requiring reasons to be given by a potential recipient of direct payments as to why he or she wishes this facility." [12.11, p426]

      I don't know if you can get any advice from a solicitor? The other route to a JR if you can't get advice from a solicitor or can't bear to go to court again, is the Local Government Ombudsman. The LGO is free, although can take a lot longer and you'd have to make a complaint first. Here's the info:

    3. I would not advise wasting time with the Local Government Ombudsman, from experience you are unlikely to get far with your scenario. They will not criticise decisions taken by social workers, even if perverse. Community Care law is weak and the local authority will defend to make you look the problem. LGO is more likely to take side of local authority on this. Direct JR is possibly better, but expensive.

    4. Following on from Lucy comment, the Royal Courts of Justice will require you to exhaust all avenues before a JR is brought.

      As to direct payments and of interest.

    5. This is addressed to Lucy Series. Although your blog has much to commend it from the perspective of someone who has come to community care recently to focus on human rights, there is some naviety about the system and how it has developed into what it has become today.

      There are no problems with the decision clearly made not to publish my comments as a carer- which are based on fact, as someone also with an academic background.

      You clearly have problems with experiences of others, who have long been in the field / gone down a route, if they differ to your very short experience of care work.

      The enlightened academics do not mind rocking the boat, because often what is published is contestable and contested by others. So you see in the field of Human Rights too the messy situation the CoP / MCA is getting and has got into.

      Human beings never learn.

    6. Anonymous, I've just checked my spam filters and found several comments in there - some spam, some not - it's possible those are the comments you are referring to that I hadn't published, but it's hard to tell since you don't identify yourself.

    7. Lucy hi,

      I think you have posted my comments, will review.

      On the issue of JR, costs would be met by the state if a person is in receipt of Income Support or costs are proporationed, refer form EX160. A JR can be done by the indiviual, the internet has resources on this matter. A JR should be made within 120 days? of a decision made. Refer (I say this from my expereince of applying for a JR personnely)

      The form N461 is like another which is to be completed accordingly, provide the supporting papers (additonal copies will be required).

      The councils will challenge and present is costs and response.

      Lucy FOI request to London Councils - FACS, refer

    8. Mark of interest, though the SHA & PCT's are to be abolished thought this might be of further interest and use. Refer and

  5. Thank you for this analysis - it puts some hard facts onto what every carer knows is actually happening. When our sons care package was reviewed we had the temerity to ask for a carers assessment. They were very unhappy about this and only did it when we insisted, and then only as a brief 'add on' to the main review - with no service outcome. (Our son was profoundly and multiply disabled, physically and mentally.)
    Our authority Lancashire, isn't on the list at all. Probably because it takes the policy of not responding, as I think this website has found before.

  6. FYI,7006,PR.html , and

  7. Thanks for sharing this Mark, if you have the energy I would strongly suggest challenging their last argument!!

  8. I am surprised that any carer accepts to waste 90 minutes on a pointless tick box exercise with nothing meaningful offered to meet their needs as a carer. I stopped responding to social work requests to meet for this after some serious issues with adult services and realising the provision although requested by me was not to meet my needs at all.

    The carers assessment today has nothing to do with meeting needs (as the caree only is the statutory concern). It is about gauging the 'health' of the carer so social worker can make a best interests decision to prepare alternative care if carer is 'at risk' of harming / neglecting the client e.g. through inability to cope. If you are lucky you might get offered 1 week a year for caree to be placed in residential care, but you will pay for it- so the grant is a joke.

    With the proposed Social Care Bill and changes suggested around safeguarding this will be more the covert element of the carer assessment I suspect.

    There is a need for political attention to actually recognising carers need not only to be recognised but their reduction in life expectancy and life chances, compared to non caring peers, too need addressing. It is not services to carer competing with services to caree, but the right to seek and actually get concrete help without judgement on the caring role or through tick box exercises.

  9. Ned hi, msy provide some futher information (

    1. Dear Lucy
      Sorry that there was an issue with 'spam' but you have published what I wanted to convey as carer in dispute since 2007 regarding the carer assessment and experience of complaining to the LGO. I do not think Hillingdon will be taken to be fettering in their decision from my experience.

      I do not know whether direct payments have been offered to Mark Neary. I refused these on the basis of extra work for me as a very significant of more than 1 and having to keep good records for a local authority who keeps bad records. I wanted a service which they could have purchased themselves, but for a block contract. Local authority made me look the problem to the LGO.

  10. I have read this post with interest. However, I feel the views expressed are very one sided and the research is focussed purely on the old carers grant funding being paid directly in 'cash payments' to carers.
    Some solutions to meeting the outcomes of a carers assessment do not require cash being paid directly to the carer. For example, some outcomes identified in a carer assessment will require an increase in care package for the person being supported ie replacement care so that the carer can leave the cared for in safety. In my local council, this increase in care is paid for from community care budgets - not the old carers grant budget. I would be horrifed if money aimed at carers is used to fund care packages for the cared for.
    Obviously some interventions to support carers will require 'people' and 'buildings' and 'admin' or else they would not be able to function. I personally receive a great deal of support from my local carer support service and would not be able to carry on without that support. I am not overly concerned that the old carers grant is used to fund this service. This is of more value to me than a cash payment.
    It would be nice to read an unbiased report that is based on meaningful research. If we want people to hear us as carers then we need to make reasoned and well researched arguements. Arguements based on a few questions via a Freedom of Information Request is not reasoned or meaningful.

  11. I thought it was a pretty measured and thorough piece of research and I'm interested in what ways you feel the research could have been more meaningful. The two main things that struck me about the report were the amount of money not getting through to carers and the pointlessness of the carer's assessments. For sure, the authors probably could have asked more questions but the information they did get is very revealing.

  12. im confused, ive been a carer for the last 10 years and havent even heard of an assessment let alone had one!

  13. you contacted 60 Councils can you list the 18 who didnt reply to the request

  14. Dear Mr Mark Neary,

    I strongly believe that your article has contained some inaccurate information. I do not know and will not talk about other boroughs, but just would like to mention part about Lewisham borough/Lewisham council.
    Although this is a relatively poor borough/council, Lewisham is very rich of love and care for its pepole in needs. It also provides a lot of suuport/assistance to community organisations, especially those working with disabled people and carers.
    Taking my Vietnamese Carers Support Project as an example. Vietnamese community in Lewisham is about 6000 "strong" with those once called "boat people", among them many are elderly people and children with all sorts of health problems and their carers. Most of these people do not speak/read/understand English
    and "are deprived of mainstream services just because of thier limited knowledge of English". They rely on Vietnamese Carers Support Project to cope with difficulties of their daily life. And since 1994, Lewisham Council has been giving the VCS Project their financial assistance to operate. Our Federation of Refugees from Vietnam in Lewisham has been receiving two kinds of funding from the Council: the "core support" of more than £20,000 a year and "Carers Grant" of nearly £50,000 a year. With these funding, we could afford to have two workers to provide suuport to our community members and develop/delivery further services apart from those of Vietnamese Carers Support Project.
    We know for sure that many other community organisations also receiving the help/support from Lewisham Council, even now when the Council has to cut back budget and spending.
    When we attended consultation meeting on this issue/topic, "cutting budget and spoending", to my memory, every body seemed showing their understanding of the difficulties the Council was facing.
    I hope you will come to Lewisham and meet organisations like ours to find out more and then make some correction to your rather hard work and valueable article.
    It would even better that you then have an apology made to the Lewisham Council, without their support, many many people in LB of Lewisham would have been unable to copee with hardship, isolation and depression.

  15. Dear AnhTu.

    I have checked Lewisham's FOI response again to make sure there wasn't an error. In their reply, they state that the carers grant was split between adult social care and children's services. They do not mention any amount given to external bodies. I apologies if I have upset the people of Lewisham but I was merely copying Lewisham's own data they supplied.

  16. It is clear that for those organisations supporting carers who have time to join / belong and attend support groups some carers value this way of help. But not normally those with the most intensive caring roles - unless they have respite provision from the local authority.

    For those like myself who have been caring for decades; starting with a situation where caring was normal life and not continuously intensive / daily 24/7 but changed when 24/7 caring took over, there is no time for organisations. I am writing this at 12pm as I get ready to sleep after carees are safely sleeping.

    Caring does not come with 'one size model'. There is a spectrum of duration and intensity and whether one sort of help or another will make the difference to caree will vary too.

    But it is a fact the carer's assessment is often a pointless exercise for many with little in the way of a positive / meaningful outcome.