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Policy Briefing
May 2018
This is a regular briefing for learning disability commissioners and other associated professionals in the northwest.
You are receiving this briefing because either your organisation subscribes to the North West Training and Development Team; or you subscribed to our policy briefing mailing list on our website. If you no longer wish to receive these briefings then please click on the ‘unsubscribe’ link at the bottom of this email.
If you are using Microsoft Outlook and want to make sure that you continue to receive this briefing, please add our email address info@nwtdt.com to your Safe Senders List in Outlook. You can find out how to do this at: http://support.microsoft.com/kb/817883
This briefing is compiled by Dr Laurence Clark and Colin Elliott from Pathways Associates CIC.
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A. PATHWAYS ASSOCIATES NEWS
A1. Care and Treatment Reviews
Pathways continues to provide Clinical Support and Experts by Experience at Care and Treatment Reviews (CTRs). Although Pathways covers the North West region, a person can be placed out of borough and so they can be sent anywhere!
Improvements are evident since the CTR first started. Paperwork is more person centred and more focussed on Care and Treatment, however working towards positive risk taking still remains a gap.
Pathways is also supporting people to start building community links in the places they will be living in the future, which can be hindered by being so far away.
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A2. Supporting LeDeR reviews in Lancashire
Today, people with learning disabilities die, on average, 15-20 years sooner than people in the general population. The Learning Disabilities Mortality Review (LeDeR) programme was established to support local areas to review the deaths of people with learning disabilities, identify learning from those deaths, and take forward the learning into service improvement initiatives.
The most significant challenge to programme delivery has been the timeliness with which mortality reviews have been completed. From 1st July 2016 to 30th November 2017, 1,311 deaths were notified to the LeDeR programme. By 30 November 2017, 103 reviews had been completed and approved by the LeDeR quality assurance process.
Pathways is committed to supporting the LeDeR programme. We have a number of Experts by Experience sitting on Regional Steering Groups. A Pathways team of 8 Clinical Advisers and Oi Mei who will be project managing the work have recently completed the LeDeR training working to support Lancashire to complete a total of 30 LeDeR reviews. We are now starting work on the first few cases allocated and committed to quality reviews.
The future focus of the LeDeR programme will be to move beyond ‘learning’ into ‘action’ to support improved service provision for meeting the health and care needs of people with learning disabilities and their families.
If you would like more information about how Pathways is supporting the LeDeR programme, please contact Oi Mei Wrightson by emailing oimei.wrightson@pathwaysassociates.co.uk
(The photo shows the Pathways LeDeR Review Team and a couple of participants from Merseycare at the LeDeR training 06/04/18)
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A3. Training GPs
Here is a short report on some work Mark Shackleton has been doing with a local doctors surgery about looking after patients with Autism and or learning difficulties:
i went to visit the surgery and there was just one 3rd year medical student! However she was very nice and I think I enlightened her on some of the ways she could communicate better with people with a LD and or Autism. Specifically sending letters out in an easy to read format and giving people time to understand what has been said and checking understanding. We said if somebody was supported it was important to speak to the person as well as the support worker. We gave her a link to the material you sent, she said it would be useful on her university course.
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B. HEALTH AND SOCIAL CARE NEWS
B1. Independent Review of the Mental Health Act: interim report
An independent review of the Mental Health Act 1983 (MHA) was commissioned by the government in October 2017. The terms of reference for the review included making recommendations for improvement in relation to rising detention rates, racial disparities in detention, and concerns that the act is out of step with a modern mental health system.
The review was established to look at both legislation and practice, with recommendations extending to England in relation to matters that are devolved in Wales (including health), and England and Wales in relation to non-devolved matters (including justice). On May 1st the reviewers published an interim report summarising work so far, and the priority issues that have emerged for further examination. The review team is halfway through its work, so these are early findings. The reviewers remain keen to engage with as many people as possible, and to examine all relevant evidence as they develop recommendations for their final report later this year.
The interim report gives an update on the review’s findings and the areas it will look at next. It is based on evidence including:
- service user and carer surveys
- focus groups
- stakeholder workshops
- a call for evidence
- wider discussions with organisations and professionals
The interim report is available to download in standard and easy read formats here: http://tiny.cc/4pltty
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B2. Have your say on GP online consultations
NHS England is seeking views from GPs, practice teams and members of the public on what people think about the idea of online consultations so we can improve the service and increase the availability and use.
Online consultations are a way for patients to contact their GP practice without having to wait on the phone or take time out to come into the practice. Using a smartphone, tablet or computer, they can contact their practice about a new problem or an ongoing issue. The two surveys, which are are open from Tuesday 8 May and will close on Friday 15 June 2018 can be found here: http://tiny.cc/ctltty
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B3. NHS England pledges specialist mental health services for new mums in every part of the country
The health service is now spending £23 million rolling out the second wave of community perinatal services to underserved parts of the country and is on course to achieve full geographical coverage, when as recently as 2014 it was estimated that only three per cent of the country had good access to perinatal mental health care.
This funding forms part of a package of measures, worth a total of £365m by 2021, to transform specialist perinatal services so that at least 30,000 additional women can access evidence based treatment that is closer to home and when they need it, through specialist community services and inpatient mother and baby units.
Specialist community perinatal mental health teams can offer psychiatric and psychological assessments and care for women with complex or severe mental health problems during the perinatal period. They can also provide pre-conception advice for women with a current or past severe mental illness who are planning a pregnancy.
Teams can be made up of doctors, nurses, social workers, psychologists, psychiatrists, occupational therapists, nursery nurses and administrative staff, who all work together to provide a comprehensive service to mums, depending on what their individual needs are.
Further information is available here: http://tiny.cc/eultty
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B4. PAC report expresses concern over short term funding solutions
The adult social care sector is in a “precarious state” and has “no credible plans” for how care could be sustainably funded, according to the Public Accounts Committee (PAC).
The government report on the adult social care workforce found the sector was underfunded and revealed that staff were suffering from low pay and low esteem.
The implications of Brexit were also discussed as the committee warned the UK’s departure from the European Union (EU) could have “a significant impact on the care workforce”.
Between 2010–11 and 2016–17, spending on care by local authorities reduced by 5.3% in real terms.
Despite acknowledging that the majority of local authorities were managing to fulfil their minimum statutory duties under the Care Act 2014, the PAC found there were “clear and obvious signs of significant financial stress” with “high and rising” levels of unmet need.
The full report can be found here: http://tiny.cc/6srtty
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B5. NHS England urges more health care professionals to sign up to national pledge to stop overmedication for people with a learning disability, autism or both
An estimated 35,000 adults with a learning disability, autism or both are being prescribed an antipsychotic, an antidepressant or both without appropriate clinical justification. Long-term use of these drugs can lead to significant weight gain, organ failure and, in some cases, death.
The STOMP pledge was launched in June 2016 and supported by a number of professional bodies including the Royal Colleges of Nursing, Psychiatrists and GPs, as well as the Royal Pharmaceutical Society, the British Psychological Society and the Challenging Behaviour Foundation (CBF).
A STOMP pledge for social care followed in May 2017. So far more than 60 providers supporting nearly 60, 000 people with a learning disability, autism or both have signed up to this pledge to take action to stop over-medication.
NHS England now wants all healthcare providers to commit to the STOMP pledge to “work together, and with people with a learning disability and their loved ones, to take real and measurable steps to stop over-medication”.
Further detail can be found here: http://tiny.cc/tvltty
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B6. Transformational change in health and care: reports from the field
On 10th May the Kings Fund released a report based upon interviews with 42 people involved in leading, supporting, delivering, receiving or witnessing the changes. The report presents stories of transformational change drawing on their collective experiences and reflections.
To offer insights to help strengthen transformation efforts, the Kings Fund selected four sites that have been recognised as successful transformation initiatives.
- The Bromley by Bow Centre: an innovative community organisation in East London that works with its Health Partnership to transform the lives of people in one of the UK’s most deprived boroughs.
- Birmingham and Solihull NHS Mental Health Trust: Rapid Assessment, Interface and Discharge (RAID) is a multidisciplinary mental health service that has been transforming liaison psychiatry across the acute hospitals in Birmingham.
- Northumbria Healthcare NHS Foundation Trust: Northumbria Specialist Emergency Care Hospital is a purpose-built facility that opened in 2015 to transform emergency care across a large geographical area.
- Buurtzorg Nederland: a novel care model that has received international acclaim for transforming community care through its nurse-led, cost-effective approach.
The report and a brief summary can be found here: http://tiny.cc/8wltty
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B7. Cross-party approach to the NHS and social care
On 2nd May the Kings Fund published an article considering growing cross party support for spending on the NHS and social care needs to increase by substantially more than inflation over the next 20 years, funded by a dedicated tax.
This initiative from Conservative, Labour and Liberal Democrat MPs follows a letter to the Prime Minister in March from 98 MPs, including 21 select committee chairs and senior backbenchers drawn from across the political spectrum. The letter made the case for establishing a parliamentary commission on health and social care to examine, among other things, future demand for care and funding options. MPs who signed the letter argued that a cross-party approach to these issues was urgently needed and that the commission should report before Easter 2019.
The full article, written by Chris Ham, is available here: http://tiny.cc/oyltty
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B8. Spending on and availability of health care resources: how does the UK compare to other countries?
On 5th May the Kings Fund published a briefing focussed specifically on a small number of key resources – staff, beds, equipment and medicines – using data from the Organisation for Economic Co-operation and Development (OECD). The briefing also updates the Kings Fund’s analysis of how much the UK spends on health care under the new System of Health Accounts 2011 methodology, which has led to substantial changes in what is classed as ‘health care spending’.
Key messages include:
- Analysis of health care spending in 21 countries shows that the UK has fewer doctors and nurses per head of population than almost all the other countries that were looked at. Only Poland has fewer of both.
- The UK has fewer magnetic resonance imaging (MRI) and computed tomography (CT) scanners in relation to its population than any of the countries analysed. Although this data should be treated with particular caution, it is clear that the UK lags a long way behind other high-performing health systems in investing in these important technologies.
- Of the countries looked at, only Denmark and Sweden have fewer hospital beds per head of population than the UK, while the UK also has fewer beds in residential care settings than comparator countries. While lower numbers of hospital beds can be a sign of efficiency, the growing shortage of beds in UK hospitals indicates that bed reductions in the NHS may have gone too far.
- Although costs are rising, the UK spends less on medicines than most of the other countries analysed. A key reason for this is the success of initiatives to improve the value of expenditure on medicines, such as encouraging the use of generic drugs.
- Under the Organisation for Economic Co-operation and Development (OECD)’s new definition of health spending, the UK spends 9.7 per cent of gross domestic product (GDP) on health care. This in line with the average among the other countries looked at but is significantly less than countries such as Germany, France and Sweden, which spend at least 11 per cent of their GDP on health care.
- The picture that emerges from this analysis is that the NHS is under-resourced compared to other countries and lags a long way behind other high-performing health systems in many key areas of health care resources.
The full briefing is available here: http://tiny.cc/o2ltty
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B9. The Nuffield Trust: England could learn lessons from Japan to address social care crisis
On 9th May the Nuffield Trust published a report that concluded the British government can learn important lessons from the Japanese social care system in achieving public buy-in, an easy to navigate system and a strong focus on prevention of loneliness and ill health, experts suggest today.
The report draws on interviews and observations carried out during a study visit to Japan in October 2017, as well as a literature review and the insights from a previous study visit, to identify what England can learn from the Japanese system.
With over 65s set to account for a third of the Japanese population by 2040, the Long Term Care Insurance (LTCI) system provides universal, comprehensive care to people over the age of 65 and those with a disability aged between 40 and 65. The system is partly funded by a national insurance fund that all over 40s pay into, and partly out of general and local taxation. The report states:
- Its key success, where England has repeatedly failed, has been to garner public support through a commitment to transparency, fairness and consistency. National criteria for eligibility mean that access to care is the same regardless of where a person lives. Every three years the system is reviewed and reforms made when needed. This flexibility has enabled the Japanese Government to be responsive to public concerns and to address concerns over expenditure.
- Service users find the Japanese system easy to navigate. This is because a crucial part of the LTCI service includes having a ‘care manager’, responsible for supporting the individual to make a care plan, identifying suitable providers, coordinating between carers, the individual and the family, and overseeing the care plan in the long term. While similar roles exist in some parts of England, provision is patchy and there is no single accepted definition of such a role.
- At the heart of the Japanese system is a strong commitment to long-term prevention of loneliness and ill health, a stark contrast to England’s short-term approach, driven by budget constraints, which is focused increasingly only on those with highest needs. Services are available both to frail or sick older people and also to healthy ones, with clubs and activities for healthy over-65s promoted as part of the system.
The report can be downloaded here: http://tiny.cc/54ltty
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B10. Unwell, unsafe, and unfed – 4,000 people needing care reveal a shocking picture of neglect in our care system
A survey by the Care and Support Alliance (CSA) (published 10TH May), of nearly 4,000 people who need care or look after someone who does reveals the damning reality of a care system that is visibly failing and unfit for purpose.
The CSA states that ‘those relying on care relayed their experiences of poor care – in the worst cases amounting to neglect – at the hands of a care system that is meant to provide a safety net for them but which often lacks the resources to do so.’
The survey revealed, because of a lack of care:
- 1 in 5 felt unsafe moving around their own home, and 4 in 10 can’t leave it.
- 1 in 5 said they’ve gone without meals.
- 1 in 4 said they’ve needed hospital treatment and 1 in 8 told us they’ve been delayed leaving hospital because of not being able to get the care they need.
- Over a quarter have been unable to maintain basics like washing, dressing, visiting the toilet.
- Over 1 in 7 (16%) have had their care packages reduced, even though their needs have increased or stayed the same.
- Over 1 in 5 have not been able to work.
In response to the survey’s findings Cllr Izzy Secombe, Chair of the Local Government Association’s Community Wellbeing Board said:
“To ensure that those caring for people have the time and money needed to provide effective and safe support, social care needs to be financially sustainable, which requires government to fully plug the funding gap facing adult social care which is set to exceed £2 billion by 2020.”
“Government needs to address immediate pressures impacting on the system today, and ensure its Green Paper will deliver reforms to future-proof the long term sustainability of adult social care.”
More detail of the survey can be found here: http://tiny.cc/66ltty
The LGA response to the survey’s findings is available here: http://tiny.cc/n7lttyosy
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B11. Towards a sustainable adult social care and support system
Ahead of the green paper on the future of adult social care, the Local Government Association is publishing a series of think pieces where sector experts address issues at the heart of the debate to help define what a system fit for future generations might look like.
The first set of articles in the series was published on 9th May under the heading ‘Towards a sustainable adult social care and support system’. The articles by a range of prominent professionals can be found here: http://tiny.cc/h8ltty
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B12. LGA responds to latest delayed transfers of care figures
Responding to the latest figures published 10th May by NHS England on the delayed transfers of care, Cllr Izzi Seccombe, Chairman of the Local Government Association’s Community Wellbeing Board, said:
“Today’s figures show that councils have reduced the number of delayed days, building on a near continuous fall in delays since last summer. This latest monthly improvement – which has seen delays due to social care fall to their lowest level since September 2015 - is a fantastic achievement amid significant funding reductions, resource pressures and increased demand.”
“Adult social care is essential to reducing pressures on the NHS and needs to be put on an equal footing to the health service if delayed transfers of care are to be reduced further. Government needs to address immediate pressures impacting on the system today as part of the funding gap in adult social care which is set to exceed £2 billion by 2020 and ensure its Green Paper delivers a water-tight solution to the long-term sustainability of the sector.”
The full response is available here: http://tiny.cc/98ltty
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C RESEARCH
C1. Latest NHS Learning Disability Statistics
Data collected at the end of March 2018 show that:
- 2,365 patients were in hospital at the end of the reporting period.
- Around 9 per cent of these patients were Under 18 and around 2 per cent were 65 and over.
- There were more males than females in this month (74 per cent were male).
- There were 105 admissions to hospital; of these 15 were readmissions within a year of the previous discharge and 25 were transfers from other specialist hospitals.
- 1,440 had a total length of stay of over 2 years.
More data can be accessed at http://tiny.cc/1xmtty
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C2. Making the funding system of supported housing work for all people with a learning disability: Specialised Supported
This report from Mencap, written by the Housing LIN, shows that at a time of rising demand, specialised supported housing is a cost-effective way of providing homes for people who would otherwise be stuck in inpatient units or living in residential care, highlighting how important that independence is to people with a learning disability.
It sets out a series of recommendations to transform the range of housing options for people with complex needs, ensure operating viability and retain investor confidence in the sector.
The demand for SHH properties is anticipated to reach 25,500 – 33,500 units by 2021/22. Despite rent for SHH generally being higher than some other forms of supported housing, the research found that SHH is a cost-effective way of providing housing to those with complex needs, given that it attracts no or only very limited public funding.
It can be found here: http://tiny.cc/cvmtty
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C3. Deaths of people with a learning disability
The Learning Disabilities Mortality Review (LeDeR) programme have published two new reports about deaths of people with learning disabilities.
The first looks at existing international evidence about the extent and nature of issues in recording causes of death for people with learning disabilities.
When we die, a doctor (or coroner) will fill in a Medical Certificate of Cause of Death (MCCD). This states the medical cause(s) of our death. Guidance about completing the MCCD is issued by the World Health Organisation, so that countries can produce comparable data.
Twenty-five articles about MCCD of people with learning disabilities were identified in the literature review. Fifteen of these raised concerns about the accuracy of MCCDs for people with learning disabilities. The most common problems were:
- Not reporting that a person had a condition associated with learning disabilities when this may have been a contributory cause of the person’s death e.g. not reporting Down’s Syndrome when this had been the cause of a heart defect from which a person died
- Listing learning disabilities as an underlying cause of death, or the only cause of death e.g. reporting that a person died from having learning disabilities, and not giving any other cause of death.
The authors concluded that the concerns about the accuracy of MCCD for people with learning disabilities is such that the World Health Organisation should provide clearer guidance about reporting causes of death for people with learning disabilities.
The second paper looks at international evidence about the age and cause of death of people with Down’s Syndrome. Findings from 34 studies were included in the analysis.
The authors reported that people with Down’s syndrome died about 28 years younger than the general population. Congenital heart anomalies, comorbidities, low birthweight, and Black and minority ethnicity influenced earlier age of death, as did younger maternal age and poorer parental education. Congenital heart anomalies and respiratory conditions were the leading causes of death.
They concluded that although people with Down’s syndrome are now living longer than previously, they still die younger and from different causes than the general population.
The papers can be accessed at http://tiny.cc/6crtty and http://tiny.cc/2lqtty
The Guardian's coverage can be read at http://tiny.cc/u2qtty
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C4. Seeability Children in Focus report
SeeAbility has supported over 1,200 special school children across England, providing adjusted eye tests and collecting data. It's the biggest global study actively reporting on the eye care needs of children with learning disabilities.
Of the children using the SeeAbility service over a four academic year period we have found, with the help of Dr Maggie Woodhouse’s support in analysing our data that:
- Nearly half (47.5%) had a problem with their vision.
- A third (31.7%) needed glasses.
- Over four in ten (43.7%) had no history of any eye care.
- Only 7% had ever used a community optician.
- Of those children with a sight problem more than a quarter (28%) had a problem that was previously unknown to school or their parents
The report can be read at http://tiny.cc/2artty
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C5. Housing and Disabled People: Britain's hidden crisis
In 2016 the Equalities and Human Rights Commissin (EHRC) began their formal inquiry into housing for disabled people. They looked at whether the availability of accessible and adaptable housing and the support services around it is fulfilling disabled people's rights to live independently in England, Scotland and Wales. A central approach to this inquiry was to gather evidence from disabled people about their housing experience.
The inquiry reports put the spotlight on the state of the nation's housing for people with a disability highlighting the current lack of adequate provision of accessible and adaptable housing for disabled people provided by local authorities and registered landlords in all three countries.
In particular , the EHRC found 4 major challenges that have informed their recommendations:
- disabled people are too often demoralised and frustrated by the housing system;
- there is a significant shortage of accessible homes;
- installing home adaptations involves unacceptable bureaucracy and delay; and
- disabled people are not getting the support that they need to live independently.
- The resultant overarching report recommends that more adaptable homes are built for disabled people and that local and national governments engage with disabled people at planning stages drawing specific attention to:
- Building more accessible and adaptable homes and calling on government to introduce a national strategy that ensures there is an adequate supply of new home built to universal/inclusive design standards and wheelchair-accessible standards;
- Improving the installation of home adaptions, including ensuring more funding is available to increase supply of independent advice and information on housing options;
- Matching homes to the people that need them, including embedding independent living principles into housing assessments & allocations as well improving knowledge and monitoring accessibility of housing via accessible housing registers; and
- Supporting people to live independently, including better integrated funding across housing, health and care and access to disability advice and advocacy services.
The report can be read at http://tiny.cc/inrtty
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C6. My Marriage My Choice
This study is exploring forced marriage of adults with learning disabilities from a safeguarding perspective with the intention of developing knowledge, policy and practice to support professionals in their work of safeguarding vulnerable children and adults. Key findings are:
- The data from the Forced Marriage Unit (FMU) demonstrate the increase year on year (2009-2015) of cases being reported in respect of people with learning disabilities, which is in line with increased reporting in all cases.
- Some key differences have been highlighted however in terms of age and gender of those cases reported in respect of people with learning disabilities.
- There appears in particular to have been a reversal in trends related to gender - with more cases of males with learning disabilities being reported than those of females with learning disabilities as compared with all cases being reported.
- The ages of people with learning disabilities being reported as being at risk of or having been forced into marriage are higher than in all cases reported.
- There is evidence therefore to suggest that the profile of a ‘typical’ person who may be at risk of forced marriage is notably different in each of the wider population and the population of people with learning disabilities. This has implications for everyday practice in terms of recognising potential cases and in turn in terms of the safeguarding of people with learning disabilities.
- The areas of the United Kingdom identified from the FMU data as having the highest incidence of reported cases: London & South East; West Midlands; North West, and Yorkshire & Humberside have informed the ongoing research in Phase Two of the research. The interviews and focus groups of the four key stakeholder groups (identified earlier as people with learning disabilities, family carers, faith and community leaders and finally practitioners) were concentrated in these areas.
Toolkits, case studies, reports and other resources can be accessed at http://tiny.cc/x3utty
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C7. Transforming identities through Transforming Care: How people with learning disabilities experience moving out of hospital
People with learning disabilities are moving out of hospitals as part of the
Transforming Care programme, although thus far their views on how they have experienced this have not been researched. This paper explores how people with learning disabilities experienced moving as part of Transforming Care. Eleven people took part in semi-structured interviews; they were supported by Key Support People who knew them well.
People reported that their relationships with other people, including friends, family and staff, played a significant role in how they experienced the move. Moving was also an opportunity for people to shift their ideas about who they were as a person and opened up a wider array of stories about their identity.
The paper can be read at https://gallery.mailchimp.com/fb87a0648757436c218703f51/files/c3ef9291-9333-40a1-a144-f3119c55935d/Head_et_al_2018_British_Journal_of_Learning_Disabilities.pdf
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D RESOURCES
D1. Designing services for people living with learning disabilities and behaviour that challenges
Jonathan Senker, Chair of the Committee for the NICE guideline on learning disabilities and Chief Executive for VoiceAbility shares his thoughts on why a new guideline is so important to the social care sector.
The blog can be accessed at http://tiny.cc/fyqtty
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D2. Housing – Getting People Home from Hospital
This interactive map, developed by Foundations and the Housing LIN, highlights examples of where housing organisations and services are, or have been actively supporting hospital discharges and helping to get people home.
This map also displays NHS England-reported data showing the number of delayed discharges of care from hospital arising from housing issues (showing the period between January – December 2017).
The map can be accessed at http://tiny.cc/hxrtty
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D3.Behaviour that challenges: Planning services for people with learning disabilities and/or autism who sexually offend
Compared to the general population, offenders have disproportionately higher burdens of health and social care needs and people with a learning disability, autism or both can face even greater burdens. Joint training between health, social care and justice agencies can help identify shared priorities and break down some of the barriers and misunderstandings that often exist between different professional groups and sectors. For example, having a shared understanding of ‘risk’ and the factors that can impede positive risk taking, are especially pertinent.
Building on a seminar held in May 2017, this briefing paper provides a stimulus for further discussion. It brings to the fore the plight of an especially marginalised group of people, and the challenges they face, describes positive practice examples and proposes recommendations for improved outcomes.
It can be accessed at http://tiny.cc/javtty
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D4. Your rights about your personal information in Easy Read
An easy read guide to people's rights around their personal information. It can be accessed at http://tiny.cc/pkvtty
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