Nurse! Nurse?

This post is the fourth in a week of blogposts looking at what’s happening for people with learning disabilities in England. For a bit of a change today, rather than looking at social care statistics, this blog is about the NHS learning disability nursing workforce in England. Learning disability nurses in both general hospitals and in community health services have been found to be important facilitators for people with learning disabilities getting decent healthcare from health services (see for example Tuffrey-Wijne and colleagues’ open access paper here http://bmjopen.bmj.com/content/4/4/e004606.full or McConkey and colleagues' work on health facilitators http://www.nationalelfservice.net/populations-and-settings/primary-care/introduction-and-uptake-of-annual-health-checks-across-northern-ireland-for-patients-with-learning-disabilities/ ).

So, what’s happening to the workforce of nurses working specifically with people with learning disabilities in England? The Health and Social Care Information Centre, as part of their suite of NHS workforce statistics (see http://www.hscic.gov.uk/searchcatalogue?productid=18858&topics=0%2fWorkforce&sort=Relevance&size=10&page=1#top ), provide monthly information on the number of Whole-Time Equivalent (WTE) nurses in the categories of Community Learning Disabilities nurses and Other Learning Disabilities nurses. The graph below shows this information for the month of May from 2010 through to 2015.

For community learning disabilities nurses, there were 2,571 WTE nurses in May 2010, dropping steadily to 2,003 WTE nurses in May 2015. The picture for ‘other’ learning disabilities nurses (presumably in large part working in general hospitals) is even worse, dropping from 2,916 WTE nurses in May 2010 to 1,754 WTE nurses in May 2015. Overall, this is a drop of 32% in the number of WTE learning disability nurses over 5 years.

In Whole Time Equivalents, less than 1% of this nursing workforce are nurse consultants, 1% are modern matrons, 5% are managers, 92% are ‘other first level’, and less than 1% are ‘other second level’ nurses.

It’s also worth bearing in mind that this workforce information is for NHS services only – we don’t know how many nurses are working with people with learning disabilities in third sector/private services (particularly specialist inpatient services).

Nursing for people with learning disabilities is on the Department of Health’s agenda, with a ‘Strengthening The Commitment’ programme running since 2012 (see https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/309153/Strengthening_the_commitment_one_year_on_published.pdf ) and an announcement of increased numbers of training places. Learning disability nurses are often pushing for leadership positions, and through initatives like @WeLDNurses are trying to create communities of nurses that question their own practice and are open to the experiences of people with learning disabilities, families and others.

However, according to an RCN survey of learning disability nurses in 2015 (unfortunately neither the number not representativeness of the nurses replying to the survey are stated in the article), things aren’t looking good for learning disability nursing in England. Many nurses in this survey report cuts to services (including nursing services), downgrading and pay cuts, and a lack of suitable community services for the people with learning disabilities they’re supporting (see http://www.rcn.org.uk/newsevents/news/article/uk/patient-safety-learning-disability ).

A difficult environment for strengthening the commitment?

Sources

Department of Health (2014). Strengthening the Commitment: One year on. London: Department of Health. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/309153/Strengthening_the_commitment_one_year_on_published.pdf

Health and Social Care Information Centre. NHS Workforce Statistics – July 2015, Provisional Statistics. http://www.hscic.gov.uk/searchcatalogue?productid=18858&topics=0%2fWorkforce&sort=Relevance&size=10&page=1#top

McConkey R, Taggart L & Kane M (2015). Optimizing the uptake of health checks for people with intellectual disabilities. Journal of Intellectual Disabilities, 19, 205-214.

Tuffrey-Wijne I, Goulding L, Giatras N, Abraham E, Gillard S, White S, Edwards C & Hollins S (2014). The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study. BMJ Open 2014, 4, e004606 http://bmjopen.bmj.com/content/4/4/e004606.full

You can have any colour, as long as it's council

This post is the third in a hasty series looking at what’s happening for people with learning disabilities in England, mainly using social care statistics for 2014/15 that have been recently released (see http://www.hscic.gov.uk/catalogue/PUB18663 ) .

This short blogpost (just one graph) looks at social care personal budgets and adults with learning disabilities in England. As with the other statistics reported in this blog series, there have been some changes in the way statistics concerning self-directed support/personal budgets have been collected in 2014/15, but it is possible to produce some comparative data over time.

The graph below reports the number of adults with learning disabilities aged 18-64 years who get: a direct payment only; a personal budget that partly involves a direct payment; or a council-managed personal budget (the statistics do not use categories such as Individual Service Funds). When interpreting this graph, it’s important to remember that up to 2013/14 these figures are based on adults with learning disabilities known to the council – in 2014/15 this changed to adults with learning disabilities getting long-term support from the council. As the first blog in this series discusses (http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html ), this means that 141,980 adults with learning disabilities aged 18-64 known to the council in 2013/14 became 124,235 adults with learning disabilities aged 18-64 getting long-term social services support in 2014/15. This complicates how we can interpret the stark changes from 2013/14 to 2014/15.

We can ask a few questions about personal budgets on the basis of this information.

First, we can say overall that in 2013/14, 62% of adults with learning disabilities aged 18-64 known to councils were using some form of personal budget, compared to 68% of adults with learning disabilities aged 18-64 getting long-term support from councils in 2014/15. For the first time in 2014/15, we also have data for adults with learning disabilities aged 65+; of the 15,320 older people with learning disabilities getting long-term support, 7,045 (46%) were getting some form of personal budget.

What kind of personal budgets are adults with learning disabilities getting? Of the 83,995 adults with learning disabilities aged 18-64 getting a personal budget in 2014/15, around a quarter (26%) were getting a direct payment only, fewer than that (16%) were getting a part-direct payment as part of a personal budget, and well over half (59%) were getting a council-managed personal budget. Of the 7,045 adults with learning disabilities aged 65+ getting a personal budget, only 9% were getting a direct payment only, even fewer (7%) were getting a part-direct payment as part of a personal budget, and almost everyone (84%) was getting a council-managed personal budget.

Second, what are the trends over time? Looking at 2009/10 to 2014/15 as a whole, the number of adults with learning disabilities aged 18-64 getting any kind of personal budget has apparently massively increased, by 256% no less, over this time period. However, almost all of this increase has been in council-managed personal budgets (a whopping 909% increase) and to a lesser extent part-direct payment personal budgets (639%), with direct payment-only budgets only increasing by (cough) 27% over these 5 years.

Finally, what to make of the absolute reduction in the number of adults with learning disabilities aged 18-64 getting personal budgets in 2014/15, a reversal of the trend from 2009/10 to 2013/14? Is this drop of 4,530 people getting personal budgets an artefact of the change from ‘known to council’ to ‘getting long-term support’ I mentioned earlier? If that is the case, then we must assume that all these 4,530 people were getting one-off personal budgets in 2013/14 – so why is almost all the drop in people getting council-managed personal budgets? It seems more reasonable to assume that, as reported in the recent In Control report (see http://www.in-control.org.uk/news/in-control-news/promoting-people%E2%80%99s-right-to-choice-and-control-under-the-care-act-2014.aspx ), councils are withdrawing service support, in this case from some adults with learning disabilities.

So (and I know this doesn’t apply to all councils by any means), we have a pattern of withdrawal of personal budgets, with most personal budgets managed by your friendly neighbourhood local authority. You can have any colour, as long as it’s council.

Sources

Health and Social Care Information Centre. Community Care Statistics, Social Services Activity, England 2014-15 http://www.hscic.gov.uk/catalogue/PUB18663

In Control. Promoting people’s right to choice and control under the Care Act 2014. http://www.in-control.org.uk/news/in-control-news/promoting-people%E2%80%99s-right-to-choice-and-control-under-the-care-act-2014.aspx

Crushed by the wheels of industry? If only...

This post is the second in a haphazard series looking at what’s happening for people with learning disabilities in England, mainly using social care statistics for 2014/15 that have been recently released (see http://www.hscic.gov.uk/catalogue/PUB18663 ) .

This relatively short post focuses on paid employment. Although the way these statistics have been collected have changed for 2014/15 compared to earlier years, comparisons over time are relatively straightforward. And it’s important to realise that these statistics are only for ‘working age’ (age 18-64 years) adults with learning disabilities who up to 2013/14 were ‘known’ to councils, and in 2014/15 were getting ‘long term support’ from councils (see http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html for a discussion of this).

So, the first graph we have below is the percentage of working age adults with learning disabilities in any form of paid employment (no matter how part-time). The percentage is shockingly low, dropping consistently from 2011/12 to 2014/15, and standing at 6.0% in 2014/15. There is also a steady gap in paid employment between men and women with learning disabilities.

This paid employment rate of 6.0% compares to a paid employment rate of 73.5% of the working age population of England as a whole (see http://www.ons.gov.uk/ons/rel/lms/labour-market-statistics/september-2015/statistical-bulletin.html ).

Statistics concerning employment rates for adults identified as having learning disabilities as children but not identified as such in adulthood are obviously hard to come by. Using a large-scale population survey to estimate employment rates for adults likely to be part of this ‘hidden majority’, we estimated that 15% of these adults were in employment for 16+ hours per week, compared to 58% of the comparative population in the survey (Emerson, Hatton, Robertson & Baines, 2014).

The reduction in the percentage employment rate to 2014/15 looks bad enough. But because the total number of adults with learning disabilities known to councils (or getting long term support) dropped so much from 2013/14 to 2014/15, the drop in percentage employment rates actually masks a much bigger drop in the number of adults in paid employment.

The graph below shows the number of working age adults with learning disabilities in any form of paid employment (data on the number of people engaged in voluntary work is also available up to 2013/14, but has not been collected in 2014/15). The number of people in any form of paid employment has dropped by a quarter in three years, standing at just 7,430 people in 2014/15. [It is important to note that the 2008/09 data were only collected over a half-year, so they’re not great for comparison purposes]

Most of the paid employment that people with learning disabilities have is part-time – less than 16 hours per week, as the last graph below shows. The sharp drop in the number of adults in paid employment from 2013/14 to 2014/15 happens for people working less than 16 hours per week and for people working more than 16 hours per week.

And what of those working age adults with learning disabilities getting long-term social services support who are not in paid employment? In 2014/15; 11,920 people were recorded as actively seeking work (and potentially liable to benefit sanctions?); 51,095 people were recorded as not actively seeking work; and councils didn't know the employment status of 53,020 people to whom they are ostensibly providing long-term support.

One of the things I find particularly depressing about these statistics is that this is an area where there is good evidence on how to support people into paid employment, and how cost-effective supported employment can be if you do it right (see the NDTi reports and resources on this here http://www.ndti.org.uk/major-projects/current/employment-support-for-disabled-people1/ ). Yet according to the survey NDTi did as part of their research, many local authorities are withdrawing funding for supported employment.

Work might not be everything, but it is something. Instead of people with learning disabilities having to pay agencies to work under the guise of ‘therapy’ or ‘work experience’, why not actually, erm, pay people for the work they do?

Sources

Emerson E, Hatton C, Robertson J & Baines S (2014). Perceptions of neighbourhood quality, social and civic participation and the self rated health of British adults with intellectual disability: cross sectional study. BMC Public Health, 14, 1252 [open access http://www.biomedcentral.com/1471-2458/14/1252 ].

Health and Social Care Information Centre. Community Care Statistics, Social Services Activity, England 2014-15 http://www.hscic.gov.uk/catalogue/PUB18663

National Development Team for Inclusion. Employment support for disabled people. http://www.ndti.org.uk/major-projects/current/employment-support-for-disabled-people1/

The disappeared

Official statistics for social care in England in 2014/15 have recently been released (see http://www.hscic.gov.uk/catalogue/PUB18663 ). As with many other official statistics there have been major changes to the data collected in 2014/15, making last year something of a year zero and comparisons to previous years difficult. Nevertheless, in a series of blogposts over the next week or two, I want to use these and other statistics to explore what’s happening in social care (and in service support more generally) for people with learning disabilities in England.

Changes in the data collected make errors of interpretation even more likely than usual, so please do say if I’ve got anything horribly or slightly wrong and I’ll update the post accordingly.

In this post, I want to talk about the apparent disappearance of people with learning disabilities (particularly people given the label of mild or moderate learning disabilities) from the official gaze of statistics and services designed to support people with learning disabilities.

The ‘transition cliff’ in service identification of people with learning disabilities as they move from services for children to services for adults is well-known and long-established. The graph below, based on data from 2010 (Emerson & Glover, 2012), shows how many people out of every 1,000 people generally are recognised as a person with learning disabilities by schools (for children) or GPs (for adults), across different ages.

For children aged 10-15 years in 2010, around 5 children out of every 1,000 were identified within education services as a child with ‘severe learning difficulty’ or ‘profound and multiple learning difficulty’. A much bigger number, from 40-50 children per 1,000, were identified as a child with ‘moderate learning difficulty’. However, by the time people are in their early twenties, the number of adults identified as a person with learning disabilities (of any ‘level’) on GP registers is at around 5 people per 1,000; around the same number as children with ‘severe’ or ‘profound & multiple’ learning difficulties. What’s happened to all the adults formerly known as children with ‘moderate learning difficulty’ – our best guess is something around 700,000 people in England? They have simply vanished from the sight of health or social services as a person with learning disabilities. While many people in this group might view this as an escape from an unhelpful sticky label, others might see it as an eviction from much-needed support.

How many adults with learning disabilities are likely to need support from social services over the next 20 years? Taking as a starting point the number of adults with learning disabilities known to social services in 2012 (i.e. already missing out the ‘hidden majority’ of adults with learning disabilities), we (Emerson, Robertson, Coles & Hatton, 2012) made population projections of the number of adults likely to need social services support up to 2023, depending on how strict social services were going to be about ‘eligibility’ for services. As the graph below shows, even if councils only offer support to people with ‘critical’ or ‘substantial’ needs, the number of adults with learning disabilities needing support is projected to increase by around 2% a year – which by 2023 adds up an increase of around 50% in the number of adults needing social services support from 2012. 

So far, I hope I’ve established that a huge number of adults identified as having learning disabilities in childhood do not carry this identification (and eligibility for support as a person with learning disabilities) into adulthood. I’ve also tried to show that even using strict eligibility criteria, the number of adults with learning disabilities likely to need support from social services is going to increase hugely in the next 20 years.

What do recent trends tell us about the number of people with learning disabilities being identified within education and social services? Is the number of people increasing in line with increasing numbers of children on school rolls generally, and in line with projections of increasing numbers of adults with learning disabilities needing social services support? Although changes in the way statistics are collected in 2014/15 make this judgement difficult, my initial answer is no. In fact, and particularly for people with ‘mild/moderate’ learning disabilities, the opposite is happening – people are being ‘disappeared’.

The graph below shows Department for Education statistics on the number of children identified as having a ‘moderate’, ‘severe’ or ‘profound and multiple’ learning difficulty/disability at the level of having a statement of special educational needs (up to 2014) or having an Education Health and Care Plan (2015) - see https://www.gov.uk/government/collections/statistics-special-educational-needs-sen. While the number of children with ‘severe’ and ‘profound and multiple’ learning difficulties has steadily increased from 2010 to 2015, as we would expect, the number of children with ‘moderate’ learning difficulty has dropped by nearly 20% over the same 5 years.

Is this because fewer children with ‘moderate’ learning difficulties are getting a statement/EHCP (which bring with them resources and responsibilities for services) and are being identified at the less resource-intensive level of ‘school action plus’ instead? The graph below says no; if anything the number of children with ‘moderate’ learning difficulties at school action plus level plummeted even faster from 2010 to 2014 – in 2015 the category of ‘school action plus’ was abolished from the publicly available statistics.

What about the number of adults with learning disabilities using social services – are social services in a time of severe financial pressure managing to keep pace with the number of adults with learning disabilities likely to require support? Again, the answer seems to be no. The next graph shows the total number of adults in England aged 18-64 years who were reported as being known to their council as a person with learning disabilities, up to 2013/14. In 2014/15, this definition changed in the official statistics to the number of adults with learning disabilities aged 18-64 years who were receiving long-term support from the council.

The graph shows that up to 2013/14 there were small year-on-year increases in the number of adults with learning disabilities aged 18-64 known to their council (up to 141,980 people in 2013/14) – not enough to keep pace with population projections, but still increasing. In 2014/15 there were 124,235 adults with learning disabilities aged 18-64 getting long-term social services support (there were a further 15,320 adults with learning disabilities aged 65 or over getting long-term support) – if these were equivalent figures this would be a 12% drop in one year. As an aside, it’s worth noting that in 2013/14 more adults (214,000 people; Glover, 2014) were identified by GPs as having a learning disability – data for 2014/15 are not available yet, but among other things it throws up a conundrum for health and social care integration bods.

Of course, the figures are not likely to be completely equivalent, although other information which I will discuss in a later blogpost strongly suggests to me that this drop cannot be completely accounted for by missing out from the official statistics people who were ‘known’ to councils but who were not receiving social services support. And even if this drop were due to people ‘known’ to services but not getting long-term support being left out of these statistics, their omission is ominous. In the world of official statistics and service support, it’s a short step from being uncounted to not officially existing.

What does it all mean? Well, to me there is a clear pattern that throughout education and adult social services, people who would formerly have been officially identified as a person with learning disabilities are being ‘disappeared’ from service recognition and responsibility. Obviously the people themselves do not cease to exist (and a label of learning disabilities may not always be the most helpful way to support someone). But I do wonder if we’re seeing another of the periodic big historical shifts in the population of people who officially ‘count’ as people with learning disabilities. This shouldn’t be surprising – changes in the population of people given the label of learning disabilities (or historical, pejorative near-equivalent labels) have historically tended to follow big social changes, and a time of designed austerity may be no different in this respect.

In Victorian times, rapid industrialisation and the movement of people to cities can be argued to have ‘created’ a whole new population of people coming into the category equivalent to ‘learning disability’. Edwardian moral panics, allied to a eugenic approach, led to the equivalent of ‘learning disability’ being used as a moral label as much as anything else, with another shift in the population caught in this label. The moral connotations of the label dropped away somewhat throughout the 20^th century, but the rise of the welfare state supported people with what would now be a label of ‘mild’ learning disability.

With the current reform/withdrawal/dismantling of the welfare state, perhaps we’re seeing an officially sanctioned (if implicit) shrinkage of who counts as a person with learning disabilities, with people with ‘mild’ learning disabilities being written out of the picture and state support reserved for ‘protecting’ the most ‘vulnerable’. My worry is that this retrenchment is consigning generations of people to a fight for survival in education, employment, housing, health and social contexts that are anything but conducive to a flourishing life.

Sources

Department for Education. Statistics: special educational needs (SEN) https://www.gov.uk/government/collections/statistics-special-educational-needs-sen 

Emerson E & Glover G (2012). The ‘transition cliff’ in the administrative prevalence of learning disabilities in England. Tizard Learning Disability Review, 17, 139-143.

Emerson E, Robertson J, Coles B & Hatton C (2012). The future need for social care services for adults with disabilities in England 2012-2030: Findings. NIHR School for Social Care Research  http://sscr.nihr.ac.uk/PDF/Findings/SSCRResearchFindings5.pdf

Glover G (2014). The uptake of learning disability health checks 2013 to 2014. London: Public Health England https://www.improvinghealthandlives.org.uk/publications/1239/The_Uptake_of_Learning_Disabilities_Health_Checks,_2013_to_2014

Health and Social Care Information Centre. Community Care Statistics, Social Services Activity, England 2014-15 http://www.hscic.gov.uk/catalogue/PUB18663

Invisible Cities: The city of children

There are invisible cities in England. You can’t see them very easily, but thousands (some say millions) of people live in them, not usually by choice (they don’t tend to be holiday destinations). Here I want to give you a quick tour of the Invisible City of Children.

How many children live in the invisible city?

No-one knows quite how many children live in the city, but until recently it was probably not far off a quarter of a million children. In recent times children in the city have been vanishing, with the number of children in the biggest suburb of the city, the Emeldee district, dropping by about a quarter over the last 4 years (to around 130,000 in 2014). No-one is quite sure what’s happened to them. Although the suburbs are much smaller, the number of children in the Eseldee and Piemeldee districts is continuing to slowly increase (around 31,000 and 10,600 children respectively).

Most children in the city are boys (63%), and although some children are earmarked for life in the city from before birth, children can arrive in the city at any age; children in the Eseldee and Piemeldee districts tend to arrive at a younger age than children in the Emeldee district.

Most children bring their families to live with them in the invisible city, although in 2013 almost 4,500 children in the city were being ‘looked after’ away from their families – children in the invisible city are 3-6 times more likely to be ‘looked after’ than children living elsewhere.

Education

Most children in the Emeldee district (88%) go to school outside the city, with just 12% of these children in the city’s ‘special’ schools. Most children in the Eseldee (78%) and Piemeldee (83%) districts stay in the city’s ‘special’ schools for their education. Over the last few years, more children in all districts are staying in the city’s schools rather than going elsewhere for their education. There is also a shadowy network of ‘special’ boarding schools, often on the outskirts of the invisible city – no-one knows how many children are in these boarding schools, but in 2011 the estimate was around 800 children (most of whom are weekly boarders, coming home to their families at weekends).

Children in the invisible city are more likely to be absent from school than children elsewhere, particularly children in the Piemeldee district who miss on average 1 out of every 8 half-day school sessions (children outside the invisible city miss on average 1 out of every 22 half-day school sessions). For children from the Piemeldee district, most of these absences (80%) are due to child illness or to attend medical appointments; this is similar for children from the Eseldee district (73%). Children from the Emeldee district are less likely to be absent from school for these reasons (57%), but are more likely to be absent from school without permission (21%).

Children in the Emeldee district are also much more likely to be temporarily excluded from school (6.3% vs 1.8% of children) or permanently excluded from school (0.2% vs 0.0% of children, that’s over 250 children in the Emeldee district permanently excluded from school every year) than children living outside the city.

Children in the invisible city are less likely than other children to say that they like school, find school interesting, or say that they are happy at school.

Only about 10% of children in the Emeldee district stay on at school after the age of 16; many more children in the Eseldee districts (62% of children) and Piemeldee districts (49% of children) stay on after the age of 16.

There is virtually no higher education in the invisible city.

Poverty

The invisible city on the whole is less wealthy than the rest of England. Over 35% of families in the Emeldee and Eseldee districts are eligible for free school meals, as are over 25% of families with a child in the Piemeldee district. In the rest of the country, between 15% and 20% of families with a child are eligible for free school meals. Families in the invisible city are also more likely to stay in poverty for longer than families outside the city.

Parents of children in the invisible city (particularly as more families in the invisible city are headed by single parents) find that the family is less likely to get the support needed for parents to work, especially full-time.

Housing

Compared to houses in other parts of England, more houses in the invisible city are rented, overcrowded, in a poor state of repair, and too cold in winter. Children in the invisible city are also more likely than children in other parts of England to have been homeless at some point in their childhood.

Social life

Children in the invisible city are less likely to say they have at least one good friend than children outside the city, and are less likely to spend time with friends outside school.

Bullying and violence

Children and adolescents in the invisible city are more likely to be bullied (often by children outside the invisible city), and are more likely to experience violence from other people, compared to children and adolescents living elsewhere in England.

Children’s health

Children in the invisible city are much more likely than other children outside the city to die in infancy – 12% of people living in this or similar invisible cities as adults die before the age of 4 years, compared to less than 1% of people living outside these invisible cities.

A minority of children in the invisible city are reported by their parents to be in fair-poor health (10%), although this is still a higher level than reported by parents for children elsewhere (2%). Children in the invisible city are more likely to have eyesight problems, hearing problems or epilepsy than other children.

Children in the invisible city are less likely than other children to have breakfast or fruit every day, and at least one parent is more likely to be a smoker. Over half of children in the invisible city (56%) never do sports or exercise, compared to a quarter (25%) of children outside the city.  Children in the invisible city are more likely to be obese than other children.

A minority of children in the invisible city show signs of being distressed – again this is more likely to happen in the city than elsewhere in England. This is also the case for their parents.

The future

Unlike children in other parts of England, who typically start carving out an imagined future for themselves during their teenage years, children and families in the invisible city are discouraged from imagining their future lives as adults outside the invisible city, in terms of a job, a home of their own, travel, friendships, someone to love and be loved by, and maybe a family of their own some day. Instead, a ‘transition process’ exists to prepare teenagers and their families for a life as adults in another invisible city.

Invisible? Yes. Inevitable? No.

There is no reason why this Invisible City of Children has to be like this – none of this is inevitable for children with learning disabilities and their families. With political and social will, this invisible city could be a place where all children are well educated, families live in good housing and have enough money to live good lives, and children have great social lives and are not subject to bullying and violence. In this city, children and families would be healthier and happier, and could imagine fulfilling futures for everyone. And, perhaps, the invisible barriers that act to create this invisible city would dissolve, so children with learning disabilities and their families can fully inhabit, alongside everyone else, the real cities, towns and villages where they live.

Update: Glossary
In response to an excellent suggestion from @thekathmoss here's a brief glossary of the districts for non-city dwellers, based on the categories used in Department for Education statistics (see www.gov.uk/government/collections/statistics-special-educational-needs-sen )
Emeldee: MLD, or children with Moderate Learning Difficulty
Eseldee: SLD, or children with Severe Learning Difficulty
Piemeldee: PMLD, or children with Profound & Multiple Learning DIfficulty

Gazetteers

Emerson, E. (2015). The determinants of health inequities experienced by children with learning disabilities. Public Health England: London. www.improvinghealthandlives.org.uk/publications/313899/The_determinants_of_health_inequities_experienced_by_children_with_learning_disabilities

Emerson, E. & Hatton, C. (2014). Health Inequalities and People with Intellectual Disabilities. Cambridge: Cambridge University Press.

Hatton, C., Emerson, E., Glover, G., Robertson, J., Baines, S. & Christie, A. (2014). People with learning disabilities in England 2013. Public Health England: London. www.improvinghealthandlives.org.uk/publications/1241/People_with_Learning_Disabilities_in_England_2013

Hatton, C. & Glover, G. (2015). Young people with learning disabilities or autistic spectrum disorder in post-compulsory state supported schools in England. Tizard Learning Disability Review, 20, 170-174.

Client contribution? that'll do nicely

This is just a quick blog containing some data I came across today while rummaging amongst the information stored by the Health and Social Information Centre's excellent NASCIS system (http://www.hscic.gov.uk/nascis ).

I hadn't noticed before that the information relating to expenditure by social services (PSS-EX1 - notice the strategic use of the hyphen to avoid embarrassment when searching for it on Google) also includes information on income from 'client contributions' (see here for more guidance on what this means http://www.hscic.gov.uk/media/13520/PSS-EX1-Guidance-2013-14/pdf/PSS-EX1_Guidance_2013-14_v1.0.pdf ).

The graph and table below summarise the information on client contributions concerning social services for adults with learning disabilities aged 18-64 years, in England, from 2005/06 to 2013/14.

Overall, in 2013/14, client contributions for social services for working age adults with learning disabilities totalled £262.8 million. Most of this came in contributions for residential care placements (£141.4 million in 2013/14), followed by 'fairly charged' community services such as day services and home care (£62.7 million), supported/other accommodation (£31.3 million), direct payments (£13.2 million) and nursing care (£8.7 million).

Overall, the black line on the graph takes the total amount of client contributions in 2005/06 and shows what this total would be over time taking into account inflation in the costs of social services (thanks again to the Personal Social Services Research Unit and Lesley Curtis in particular for their invaluable work compiling these sorts of statistics http://www.pssru.ac.uk/project-pages/unit-costs/2014/ ). As you will see, client contributions have broadly increased in line with inflation, although the 2013/14 figures might suggest client contributions beginning to rise faster than inflation.

I don't know enough about what this information means to want to make any strong comments about it at this point and I'd like to hear people's thoughts on it. £262.8 million is certainly a big chunk of money - what do people make of this amount, what client contributions are being spent on, and how this is changing over time?

Update: I've just been looking through some provisional results from the Adult Social Care Survey for 2013/14 (see here http://www.hscic.gov.uk/catalogue/PUB14386 ), which included responses 'from' 13,360 adults with learning disabilities (many people are 'helped' by support workers to complete the survey, so the results have to be taken with a Lot's wife of salt). According to this survey, 22% of adults with learning disabilities said that they buy some more care and support with their own money, and 10% of people said that their family pays for some more care and support for them.

One Step Beyond: What do the latest statistics tell us about inpatient services and people with learning disabilities?

The Health and Social Care Information Centre (HSCIC) have today (22^nd May) published two updates of statistics about people with learning disabilities in inpatient services in England. Both of these updates are based on information from English NHS commissioners, and are re-booted updates in a series previously published by NHS England.

The first update contains a range of information on the number of people in learning disability inpatient services from February to March 2015 (it’s not information for a full three months because the responsibility for collecting the information moved from NHS England to HSCIC in January). It’s available here http://www.hscic.gov.uk/catalogue/PUB17638/lds-1415q4-rep.pdf

The second update contains similar information (in less detail) on a month-by-month basis, reporting on the month of April 2015. This is available here http://www.hscic.gov.uk/catalogue/PUB17634/ldsm-apr-15-exec.pdf

There is more detail in both of them than I’m going to mention here, and I would recommend spending a bit of time looking at both updates if this is important to you. There are a few things that jumped out at me, mainly because they suggest that, as yet, large-scale reductions in the use of inpatient services are just not happening.

First, the headline figures: the number of people in learning disability inpatient services. I found this graph from the monthly update the most helpful: ignoring the blip in January 2015 (probably due to the transfer of data-gathering responsibilities) the picture is of a consistent number of people in these services from March 2014 to April 2015 (in fact the number of people went up slightly from March to April).

Second, the population of people in these inpatient services is pretty static. During February and March 2015, only 25 people had gone into and come out of a specialist service in that time, a further 105 people had been admitted and 180 people had been discharged. When admissions and discharges can be include transfers between different inpatient services, a lot of the admissions and discharges are likely to be people being churned around the inpatient system. Even when just looking at how long people had been in their current inpatient service, nearly half (47%) of people had been in their current inpatient service for more than 2 years.

Third, there seems to be little evidence that inpatient services are sharpening up their act in terms of what might be obvious priorities. So at the end of March 2015:

·        there were still 110 people aged under 18 in inpatient services,

·        there were 90 people in learning disability inpatient services recorded as having neither a learning disability nor autism,

·        there were 285 people in inpatient services not under the Mental Health Act,

·        almost a quarter of people (22%) had not been reviewed in the last six months,

·        half of people (50%) still had no planned transfer date,

·        for almost half of people (48%), their planned transfer date was more than a year away,

·        the above statistic might partly explain why local authorities were apparently not aware of the transfer of 755 people (32%).

Given that a large majority (79%) of people are in general or low secure inpatient services, what are the apparent blockages to moving people out of inpatient services? According to people’s “care plans”, of the 1,480 people “needing inpatient care”: 510 people (21%) are “not dischargeable”, 945 people (39%) have an “active treatment plan”, and only 25 people (1%) require “indefinite inpatient care”.

This leaves 915 people (over a third of people in inpatient units, 38%) currently in inpatient services who “do not need inpatient care” according to their care plans, with 830 people “working towards discharge” and 85 having a “delayed transfer of care”. This number of people roughly corresponds to the 37% of people with a planned discharge date in the next 6 months, so if this cohort moves out of inpatient services (and is not replaced by new people) it should become visible in these statistics in the next 6 months.

Overall, while there improvements in what commissioners say they and providers are doing (for example in the number of people with plans to move out of inpatient units), as yet there is very little evidence that this is resulting in more people moving out of inpatient services, of fewer people moving in, and of inpatient services really changing what they’re doing. I also worry whether a cohort of 'easier' people are preparing to move out, with everyone else being prepared to be left where they are as 'undischargeable'. Let’s hope they are collectively feeling the heat from NHS England, to take One Step Beyond (see, I got there in the end – enjoy this https://www.youtube.com/watch?v=N-uyWAe0NhQ ).