LDAG News
Summer/Autumn 2013
Inside this issue: Confidential inquiry into premature deaths of people with learning disabilities
Challenging Behaviour Community of Practice
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LDAG gets down to business The latest meeting of the Learning Disability Advisory Group took place on 10 September 2013 at Welsh Government’s offices in Cathays Park, Cardiff. Hate Crime Framework
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One of the first discussion topics was the Hate Crime Framework and whether the LDAG should submit a response to the consultation. Two members of the LDAG are also part of the All Wales Hate Crime Research Project and agreed to liaise with the co-Chairs, Roger Banks and Sophie Hinksman, on the LDAG’s response. You can find out more about the Framework including the consultation documents in standard and Easy Read as well as details of consultation workshops being held around Wales on the Welsh Government website: http:// wales.gov.uk/consultations/equality/130711-hate-crimeframework-consul/?lang=en. Safeguarding Advisory Panel As part of the changes set out in the Social Services Bill, the Welsh Government is considering how the new framework developed for Child Practice Reviews might be applied to adult services to improve arrangements to review and learn from cases of adult abuse. This would mean that Serious Case Reviews would be replaced with Adult Practice Reviews. Mick Collins, Policy and Development Manager from Powys Adult Social Services, has been seconded to the Welsh Government to take this work forward and it was suggested that the LDAG invite him to attend a future meeting to discuss the proposals. (Continued on page 2)
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Roger Banks also suggested that this subject could be included in the agenda for the LDAG workstream “Transforming Care in Wales for people with learning disabilities and challenging behaviour” in response to the Winterbourne View abuse.
A number of LDAG members offered to take part in the various Task and Finish groups in order to have an input on certain aspects of the Measure that may affect people with a learning disability. Workstreams and sub-groups For part of the meeting, members divided into three groups to discuss specific workstreams:
transforming care in Wales postWinterbourne
health inequalities and social determinants of health
advocacy.
“To catch the reader's attention, place an interesting sentence or quote from the story here.”
Mental Health Measure Welsh Government is establishing a number of National Advisory Task and Finish groups as part of the duty to review the Mental Health (Wales) Measure 2010. The consultation process identified a number of areas of interest for the Task and Finish groups to focus on:
Part 1: eligibility of practitioners to conduct assessments
Part 2: content and form of Care and Treatment Plans
eligibility of practitioners to become care co-ordinators
Part 3: eligibility of persons other than the patient (eg carer) to request re-assessment by secondary mental health services
Part 4: role of Independent Mental Health Advocates and process for accessing their services in general health settings.
Each group was given a list of questions to consider in order to begin shaping the remit and membership of the sub-groups. The groups all came up with lists of ideas for the subgroups to work on as well as individuals and organisations who should be invited to take part. It was agreed that the Challenging Behaviour Community of Practice would consider the Deputy Minister’s response to the proposed Winterbourne View Action Plan at its next meeting on 18 September and attempt to identify the top five priorities as requested. The CoP will also nominate members to take part in the sub-group to take forward the implementation of the Action Plan. (Continued on page 3)
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30 Years and Counting Event In order to celebrate 30 years since the launch of the All Wales Strategy, the LDAG are organising an event on 14 October 2013. The event will take place at the Vale Resort, the site of the old Hensol hospital, and will be an opportunity to reflect on the last 30 years while also looking to the future. The All Wales Strategy was instrumental in the shift away from institutional care to community-based living and support. It led to the closure of long-stay hospitals in Wales such as Ely and Hensol, and enabled people with a learning disability to live in the community rather than locked away out of sight.
Page 3 Mencap Cymru, All Wales People First, Learning Disability Wales and All Wales Forum of Parents and Carers have organised the event and invited people with a learning disability, families, carers and professionals to join in the celebrations. Deputy Minister for Social Services Gwenda Thomas will be delivering a keynote speech and there will be facilitated discussions on a number of topics that affect the daily lives of people with a learning disability. The day will be chaired by the coChairs of the LDAG, Roger Banks and Sophie Hinksman, and there will be a market place area where delegates can find information about local community services. An evening meal and disco will bring the celebrations to a close. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
CIPOLD: People with a learning disability dying up to 20 years early Samantha Williams, LDAG Information Officer, recently attended a seminar on the “Confidential inquiry into premature deaths of people with learning disabilities” delivered by Anna Marriott, Research Fellow at University of Bristol. Methods and Main Findings Anna began her presentation with a brief summary of the methods used and the main findings of the inquiry. The data was based on a review of all known deaths of people with a learning disability between June 2010 and May 2012 in five Primary Care Trust areas in England. The total figures were 233
adults and14 children, which is equivalent to 0.48% of the general population (the national average is 0.4%). The main finding was that there were a lot more deaths than expected. The ages of the deceased ranged from 4 to 96 years old and were found to be: 58% male 93% single 96% white British (the researchers were unable to establish why this was so high) 40% mild learning disability 31% moderate learning disability 21% severe learning disability
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8% profound & multiple (higher than average among the learning disability population).
On average, men with a learning disability died 13 years earlier than men in the general population while women with a learning disability died, on average, a shocking 20 years earlier than those in the general population. The figures also show that those with severe and profound and multiple learning disabilities are more likely to die young. 39% died in care homes and the most common primary cause of death listed on 34% of the death certificates was respiratory problems (eg pneumonia), followed by heart and circulation problems listed on 21%. The most common secondary or contributory causes listed were heart and circulation 22% and cancer 20%. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
It was noted that far fewer deaths were reported to the coroner than the national average (38% compared with 46%) but when the deaths were reported, 90% led to a post-mortem (compared with just 44% nationally). Anna expressed the researchers’ concerns that some of the deaths were not reported to the coroner, particularly in cases were the cause of death was listed as ‘sudden death due to seizure’ (or similar) despite the fact that there was no recent history of seizures. Avoidable Deaths The seminar then went into more detail about the number of deaths deemed to have been ‘avoidable’. These were divided into two categories: ‘preventable’ meaning that the death
could possibly have been prevented with public health interventions (eg reducing smoking or healthier diet) and ‘amenable’ meaning that the provision of good quality healthcare could possibly have altered the outcome for the individual. In total, 48.5% of the deaths were assessed as ‘avoidable’ with 12% classed as ‘preventable’, 27.5% as ‘amenable’ and 9% as both preventable and amenable. When compared with the 58 comparator cases, more than twice as many of the deaths of people with a learning disability were deemed to be amenable. It was interesting to note that those with a significant partner and/or friend were less likely to die prematurely from a preventable cause. This would appear to reinforce the importance of advocacy and having someone who knows the individual well to speak up for them when they are ill. Problems Identified There did not appear to be any evidence of difficulty in identifying that a person was unwell but there were significant problems with assessing and investigating the causes of illness (diagnosis). For example, one man turned away hospital transport for a colonoscopy on two occasions stating (Continued on page 5)
Summer/Autumn 2013
Page 5 Problems with record keeping and accessing records Issues with Mental Capacity Act being followed incorrectly at every stage e.g. assessing capacity, best interest meetings etc Delays in diagnosis and treatment.
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that he was ill (severe diarrhoea). It had not been explained to him that the preinvestigation medication he had been asked to take would give him diarrhoea. This led to a three month delay in the diagnosis of his condition.
The inquiry highlighted three main barriers for people with a learning disability to receiving good quality healthcare:
Two issues in particular were identified for both people with a learning disability and the comparators:
Lack of reasonable adjustments for access to healthcare services Lack of co-ordination of care across and between pathway providers Lack of effective advocacy.
Problems with ‘Do not attempt CPR’ orders Problems with end of life care.
There was insufficient data on the deaths of the children in the study to be able to carry out any significant statistical analysis but most were deemed to be ‘expected’ due to lifelimiting conditions. Interestingly, coordination of care and information sharing appeared to be much better for children than for adults (eg use of red Child Health Record Book). “To catch the reader's attention, place an interesting sentence or
A number of general contributory factors were identified:
Mental Capacity Act (eg misinterpretation of the legislation, lack of awareness, inappropriate application of and/or adherence to the Act etc) Resuscitation guidelines Record keeping Lack of proactive care: Fear of contact Forward planning Discharge planning Postural care Long-term condition care plans Planning for transition
There were also some specific issues for people with a learning disability:
Problems with advanced health and care planning Problems with co-ordination of care and information sharing (e.g. refusal to share care plans due to data protection) Problems recognising needs and adjusting care as needs changed
quote from the story here.”
Recommendations Based on the findings of the inquiry, the final report sets out 18 recommendations aimed at reducing the number of avoidable deaths of people with a learning disability by improving access to good quality healthcare and public health interventions: 1 Clear identification of people with learning disabilities on the NHS central registration system and in all healthcare record systems. 2 Reasonable adjustments required by, and provided to, individuals, to be audited annually and examples of best practice to be shared across agencies (Continued on page 6)
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and organisations. 3 NICE Guidelines to take into account multi-morbidity. 4 A named healthcare coordinator to be allocated to people with complex or multiple health needs, or two or more long-term conditions. 5 Patient-held health records to be introduced and given to all patients with learning disabilities who have multiple health conditions. 6 Standardisation of Annual HealthChecks and a clear pathway between Annual Health Checks and Health Action Plans. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
7 People with learning disabilities to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently to achieve the same outcome. 8 Barriers in individuals’ access to healthcare to be addressed by proactive referral to specialist learning disability services. 9 Adults with learning disabilities to be considered a high-risk group for deaths from respiratory problems. 10 Mental Capacity Act advice to be easily available 24 hours a day. 11 The definition of Serious Medical Treatment and what this means in practice to be clarified. 12 Mental Capacity Act training and regular updates to be mandatory for
LDAG News staff involved in the delivery of health or social care. 13 Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Guidelines to be more clearly defined and standardised across England. 14 Advanced health and care planning to be prioritised. Commissioning processes to take this into account, and to be flexible and responsive to change. 15 All decisions that a person with learning disabilities is to receive palliative care only to be supported by the framework of the Mental Capacity Act and the person referred to a specialist palliative care team. 16 Improved systems to be put in place nationally for the collection of standardised mortality data about people with learning disabilities. 17 Systems to be put in place to ensure that local learning disability mortality data is analysed and published on population profiles and Joint Strategic Needs Assessments. 18 A National Learning Disability Mortality Review Body to be established. In July 2013, the Department of Health published its response to the inquiry, including a detailed response to each recommendation. You can read the full inquiry and the Department of Health’s response, including easy read versions, here: http://www.bris.ac.uk/cipold/.
Summer/Autumn 2013
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CB CoP: Sharing best practice on challenging behaviour As usual, the Challenging Behaviour Community of Practice (CoP) meeting held on 18 September in mid-Wales had a very full and varied agenda. A substantial part of the day was spent looking at the proposed Action Plan to transform services in Wales following the Winterbourne View scandal that was submitted to Gwenda Thomas, Deputy Minister for Social Services, for consideration via the Learning Disability Advisory Group. The Deputy Minister responded to the plan by asking for the LDAG to highlight the top five priorities so members discussed in groups which actions they believed were the highest priority and they also attempted to group actions into themes. Edwin Jones, Chair of the CoP and a co-opted member of LDAG, will collate all the feedback from this session to inform the LDAG’s response to the Deputy Minister. Members also agreed to provide details of current good practice already being undertaken in Wales and to nominate CoP members for the LDAG sub-group who will be taking forward this piece of work. There were two presentations on Assessment and Treatment Units, one by Aneurin Bevan Health Board and the other by Abertawe Bro Morgannwg. Both provided an
overview of how the services are delivered including the types of assessment carried out on admission and the types of treatment offered to in-patients including drama therapy.
“To catch the reader's attention, place an interesting sentence or quote from the story here.”
Richard Tiplady, Manager of an independent registered care home in Weston-super-Mare, came along to talk to the CoP about end of life planning for people with a learning disability. His organisation have developed a multi-agency approach to providing support to residents including training for staff at a local hospice, working with the local community learning disability team and developing end of life plans that are person-specific, respectful and reassuring. The final presentation of the day was delivered jointly by David Jones and Glenn Greenacre from Community Lives Consortium on “The effect of teaching an improved masturbatory (Continued on page 8)
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technique on the frequency and intensity of aggressive behaviour recorded for an eighteen year old man diagnosed with autism and a severe learning disability”. They began by describing their surprise and dismay at how little academic or professional literature there is available on masturbation for people with a learning disability. Any literature that does exist tends to focus on how to stop people masturbating in public rather than how to support people to masturbate appropriately and effectively. The presentation outlined some of the factors that lead to issues around masturbation for people with learning disabilities:
Limited access to appropriate information, training or education
Support staff feeling uncomfortable and ill-prepared to discuss issues around sexuality with the people they support
Limited understanding of social rules and appropriate behaviours
Limited availability of treatment or training procedures
Anxiety or stress
Side-effects of medication or physical causes
Preoccupation with sex due to under -stimulation (eg lack of alternative activities).
David and Glenn then went on describe the background to a particular case study involving a young man with severe learning disabilities and ASD who had been displaying inappropriate sexual behaviours and periods of acute aggression and self-harm. It was believed that the young man’s inability to masturbate effectively was contributing to his challenging behaviour. Staff decided to develop a training method to teach the young man how to masturbate effectively. His behaviour was monitored and recorded both before and after the intervention in order to establish whether or not it made a significant difference and the results were quite dramatic. All forms of challenging behaviour were reduced following the intervention and the young man was able to continue living in shared supported accommodation. Prior to the training, his behaviour had become so challenging that there was a possibility that he would have to be admitted to an Assessment and Treatment Unit. There are plans to publish details of the methods and findings of this intervention in the near future.
For more information or to let us know what you think, contact Sam Williams on 029 20681160 or e-mail: samantha.williams@learningdisabilitywales.org.uk Follow us on Facebook and Twitter @LDAdvisoryGroup