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.