LeDeR Annual Report 2022 to 2023

Acknowledgements

NHS Surrey Heartlands ICB (NHS Surrey Heartlands) would like to thank everyone who spoke to us about the death of your family member or friend. We understand that this may have been difficult for you and would like to express our gratitude. Without your help, we would struggle to understand about the health and social care provided to people with learning disabilities and autistic people across Surrey Heartlands. The information you have provided helps us identify areas which are working well and areas that we would like to improve on. It also helps us understand what makes it easier for people to access our services and where some of the challenges lie as a family member or friend supporting someone to access services. Throughout the completion of these reviews, we have heard some wonderful stories about people’s lives and experiences, some which are sad and others which make us smile. Again, we thank you for sharing them.

We would also like to thank everyone who provided us with information to make the reviews as thorough as possible. This includes GP surgeries, NHS Trusts, hospices, local authority teams and local care providers. Together we can identify the areas for development and work towards achieving improvements together.

Lastly, we would like to thank our LeDeR reviewers for providing detailed reviews which are written with compassion.

We hope lessons can be learned from our experience and it stops other families suffering.

Family member

Executive summary

This is the fourth LeDeR annual report produced by NHS Surrey Heartlands. Within the last year there has been significant change both within NHS Surrey Heartlands and within the LeDeR programme. Kings College London became the lead academic partner for the LeDeR programme in 2021 working in partnership with University of Central Lancashire, Kingston and St George’s University, South London and the Maudsley NHS Foundation Trust and King’s Health Partners. They produced their first report in July 2022 and are due to publish their 2nd report findings in August 2023. Local teams have produced reports, as requested by NHS England (NHSE), on data from 1st April 2022 until the 31st March 2023. It has since been announced that the National LeDeR report will report on data from the 1st January 2022 until the 31st December 2022. As a result, this report will not be comparable to the national report.

We aim to change the local LeDeR reporting timeframes next year to achieve consistency with Kings College London who will produce the national LeDeR report for 2024.

NHS Surrey Heartlands changed from a Clinical Commissioning Group (CCG) to an Integrated Care Board (ICB) in July 2022. The creation of the ICB has resulted in a change in focus which is in keeping with the aims of the LeDeR programme.

The ICB aims are:

Improve outcomes in population health and healthcare.
Tackle inequalities in outcomes, experience, and access.
Enhance productivity and value for money.
Help the NHS support broader social and economic development.

There has been a variety of work carried out to understand and improve the health inequalities faced by people with learning disabilities and autistic people over the past year and plans are in place to ensure this work keeps momentum to achieve the desired outcomes.

Key findings

In June 2021 LeDeR reviews were introduced to review the deaths of Autistic people. There has been an increase in the number of deaths of autistic people that have been reported to the LeDeR programme.
None of the deaths of autistic people have been completed as yet.
There was evidence of more ethnic diversity in the deaths reported to the LeDeR programme this year.
The median average age at death for people with learning disabilities is 67.
65% of the deaths reported between April 2022 / March 2023 were male, this is a 14% increase since last year.
From the reviews completed in 2022 / 2023, there was only 1 person who died from Covid.
The main cause of death was respiratory conditions which accounted for 37% of the deaths reviewed. Only 16% were due to aspiration pneumonia which is a decrease since last year where Aspiration pneumonia accounted for 40% of the deaths reviewed.
The second most common cause of deaths were deaths due to cardiac conditions which accounted for 16% of the deaths reviewed.
In 75% of the deaths reviewed, the individual had received an annual health check (AHC). This is lower than last year.
Screening uptake in people with learning disabilities remains low.
There is an inequity in the flagging / identification of children and young people who have learning disabilities when they access acute hospital services and the provision of learning disability liaison support across all hospital sites.
The most common good practice theme reported was the provision of reasonable adjustments.

Setting the scene

In April 2022, NHS Surrey Heartlands published their report into the ‘Health Inequalities Faced by People with Learning Disabilities in Surrey Heartlands’. This report analysed the findings of the annual health checks and went on to make recommendations based on both these findings and the findings from LeDeR reviews.

Recommended actions

The recommendations from this report were to:

Improve the robustness and comprehensiveness of Annual Health Check (AHC) discussions, so that they lead to a higher number of and more effective health interventions.
Improve the provision of follow-up support post annual health check, to ensure that interventions are more effective in the long-term.
Establish a health inequalities screening role to boost uptake of cancer screenings amongst people with Learning Disabilities.
Co-design and facilitate physical exercise opportunities that are tailored and accessible to women with learning disabilities.
Raise awareness amongst health and care professionals of how women's health and gynaecological issues may impact on weight management for women with learning disabilities and make reasonable adjustments to women’s services where appropriate.
Raise awareness amongst care and education staff who work with young males with learning disabilities about their increased risk of becoming smokers.
Put in place early educational messaging for boys and male teenagers with learning disabilities about their increased risk of becoming smokers.
Raise awareness amongst 14–19-year-olds with learning disabilities who are living at home or in supported living – and amongst family members and carers – about their eligibility for receiving an AHC.
Ensure robust information-sharing on health interventions for 14–19-year-olds with learning disabilities is in place between school-based health services and primary care.
Develop the skills of supported living and day services care staff to promote healthy lifestyles of recently independent 19 to 25 year olds with learning disabilities.
Provide support via personal budgets to promote healthy lifestyle choices of recently independent 19 to 25 year olds with learning disabilities.

In order to reduce inequalities and address the issues above, Surrey County council have employed two new public health leads dedicated to Learning Disabilities and Autism.

Whilst the above report analysed the findings from annual health checks, it also acknowledged that these findings related to people who were already known to health services and were on the GP learning disability registers. As a result, the LeDeR annual report findings were also taken into account and will continue to complement this work on an ongoing basis.

To support continued improvement and address health inequalities, NHS Surrey Heartlands now have a Learning disability and Autism Health Inequalities Board.

Governance arrangements

In July 2022 Surrey Heartlands CCG became NHS Surrey Heartlands Integrated Care Board (ICB). Integrated Care Boards are Health and Social Care organisations that work together as an Integrated Care System to deliver services and to improve the health of people who live within this area.

Within the Surrey Heartlands area, there are four place-based partnerships. These are:

East Surrey
Guildford and Waverley Health and Care Alliance
North West Surrey Alliance
Surrey Downs Health and Care Partnership

NHS Surrey Heartlands are responsible for the delivery of the LeDeR programme across Surrey Heartlands.

There are monthly LeDeR Governance meetings where focused reviews that have been completed by LeDeR reviewers are discussed and system wide actions are agreed. Every third meeting takes the form of a LeDeR business meeting.

Our three-year LeDeR strategy was published in 2021 and is monitored quarterly within our LeDeR business meeting. This ensures that we continue to make progress in achieving the aims set out within the LeDeR strategy.

These meetings are well attended by local system representatives including local acute hospital LeDeR leads, Local community provider colleagues, Local Mental Health and Learning disability provider, Adult social care commissioners, Health commissioners, Health watch, social care provider representatives and safeguarding colleagues.

The programme continues to report into the Surrey Heartlands ICS Quality, Performance and Assurance Committee and the Surrey Learning Disability and Autism Programme Board.

In turn, the Surrey Learning Disability and Autism Programme Board reports into the Surrey Learning Disability and Autism Strategy Board.

Ultimately the work of the Surrey Learning Disability and Autism Strategy Board feeds into the Surrey Health and Wellbeing Board.

Equality impact

In 2022 the Surrey Health and Wellbeing Board refreshed their Health and Wellbeing strategy following the pandemic with a renewed focus:

The Strategy's new focus is on a commitment to working in creative partnerships with communities to achieve our aim - to reduce health inequalities so no-one is left behind.

The LeDeR programme helps us better understand the health inequalities faced by people with learning disabilities and / or autistic people and how we can take action to address them.

We believe that people with learning disabilities and autistic people should have access to good quality care that adapts to ensure everyone can access all the services they may require. We are committed to working to eradicate the health inequalities our local population face.

Ethnicity

Table 1 demonstrates the ethnicity of the individual’s whose deaths have been reported to LeDeR between 1st April 2022 and 31st March 2023.

There were 109 deaths reported to LeDeR within this time period:

97 (88.99%) of which reported the individual’s ethnicity as white British
mixed-white / black caribbean was reported for two (1.83%) people
five (4.69%) people were recorded as asian
one person (<1%) was recorded as African ethnicity
one individual (<1%) was recorded as any other ethnicity but no further details were provided
ethnicity was not recorded for three individuals.

These findings are more in keeping with the Surrey Ethnicity data reported in the 2021 Census than previous LeDeR reports.

**Table 1: Ethnicity of the people who died by No. and percentage**
Ethnicity		No. of reported deaths	% of all reported deaths
White	British	97	89
	Irish	0	0
	Traveller or Gypsy	0	0
	Any other white background	0	0
Mixed/ Multiple Ethnicity Groups	White or Black Caribbean	2	1.8
	White and Black African	0	0
	White and Asian	0	0
	Any other mixed background	0	0
Asian or Asian British	Indian	1	0.9
	Pakistani	1	0.9
	Bangladeshi	0	0
	Any other Asian Background	3	2.8
Black or Black Brtish	Caribbean	0	0
	African	1	0.9
	Any other Black background	0	0
Other Ethnic Group	Chinese	0	0
	Any other ethnic group	1	0.9
	Not stated	3	2.8

About some of the people who died

Martin

Martin was a 67-year-old gentleman with a mild learning disability. He lived in a flat with his flatmate who also had a learning disability. He had previously lived with his parents who are now deceased. He had one brother and two sisters.

Martin had a voluntary job in a charity shop, he also had part time paid employment as a gardener. He had support from a domiciliary care agency for two hours, two days a week. This was to assist him with household chores, grocery shopping, banking / paying bills and correspondence. On a Friday support staff assisted Martin in cook soup which was then frozen for use over the following week

Martin was described as a quiet and private gentleman. He was fiercely independent and very much knew his own mind.

Lesley

Lesley was a 34-year-old woman with autism and learning disabilities. She used some words, Makaton and photos to communicate.

As a child she lived at home, between 16-18 years old she received shared care between home, school and a respite care. After leaving college she lived in several different supported living and residential homes, but it was difficult to find the right accommodation and support. At 21 years old, she moved to a care home outside of Surrey.

She had a good relationship with her parents and enjoyed the water and could swim. Her parent's owned a boat, and she would go out sailing which she loved.

She enjoyed trampolining and horse riding, although in later stages she was happier to groom the horses rather than ride.

She enjoyed music and a music therapist would visit weekly for music sessions, where she would make up tunes play drums and other percussion instruments.

Stephen

Stephen was an 83-year-old gentleman who had grown up in Surrey. He had a moderate learning disability. He lived in a residential home. Before moving to the residential home, he worked as a Milkman and a refuse collector. He also spent some time in Wales during the second world war.

Stephen loved to watch sports on the TV, especially the horse racing.

Stephen could communicate his needs / wants verbally however his speech could be difficult to understand therefore he required time to make his needs known.

Grace

Grace was placed in a long-stay hospital when she was a small child and lived there until 1996 when she moved into a community home. She had a long-term boyfriend from the hospital who went on to live in another home. Pre-Covid she met him twice a week and occasionally at church. However, they could not meet during the pandemic because he was at high risk. They went out for meals or sat in the garden together.

Grace was a friendly, sociable person. She was welcoming to anyone who came into the home and liked to talk and be with people.

Grace enjoyed watching cartoons and Disney films, listening to music, being in the garden, colouring and simple craft activities e.g. making pom-poms and cross stitch, bingo, shopping and going out with staff. She liked her iPad and could operate it with help. She participated in aromatherapy and music sessions in the home.

She made her wants known by speaking and made simple day-to-day decisions. She understood simple instructions but took time to process information. She recognised familiar staff and knew their names. If she did not want to engage, she closed her eyes and refused to talk. She was determined and knew what she wanted; if she said no, it meant no. She was reported to have moderate learning disability. She was 82 years old when she died.

Performance

There were 109 deaths reported to LeDeR in NHS Surrey Heartlands in 2022 / 2023. 62 reviews were due to be completed within this same timeframe in order to meet the timeframes for completion set by NHS England. Out of the 62 reviews, 51 have been completed. This is 82% of the review’s due completion.

**Table 2: Number and percentage of reviews completed in 2021/ 2022 and 2022/2023, reviews completed within compliance timeframes and how many reviews went to a focused review.**
	Notifications received	Reviews completed	Focused reviews	Percentage of all reviews completed within compliance timeframes
2021 / 2022	71	31	14	52
2022 / 2023	109	51	27	20

The data shows how many were completed in 2022/ 2023 and 2021 / 2022. It also shows how many were completed within the six-month timeframes set by NHS England. 20% of the reviews were completed within six months of notification this year. This is lower than the previous year however it is worth noting that, a further 37% were completed within five weeks of the date due (16% of these were completed within one week of the date due completion).

Reviews are taking longer than predicted however the team aim to produce and prioritise good quality reviews which reflect the individual, their families and their carers experience.

The employment of a substantive LeDeR workforce will aid forward planning and ensure a dedicated resource to undertake the reviews. Over the next few months, we aim to audit the average time spent on each review to inform our future trajectory and workforce requirements.

17 out of the 62 reviews (27%) that were due completion in 2022 / 2023 are focused reviews.

Local Reviewer Arrangements

We continue to employ bank reviewers to undertake the LeDeR reviews however remain keen to employ substantive staff to ensure there is a continued dedicated resource to undertake the reviews and input into our service improvement work.

Our reviewers have varied backgrounds in terms of skills and knowledge, which helps identify the learning from the reviews across a wide range of areas. The reviewer’s previous roles include learning disability nurses, psychologist (learning disabilities), acute hospital nurses. They bring a range of experience including continuing health care, patient safety, community nursing, psychology, behaviour support and health planning. We have also recently utilised some additional support through the short-term employment of interim reviewers who have additional expertise and experience within safeguarding, commissioning and adult social care.

Demographics

Gender

Of the 109 deaths reported to LeDeR between 1st April 2022 and 31st March 2023, 65% were male and 35% were female. This is a marked difference from last year’s LeDeR report where 51% were male and 49% were female.

Level of Learning Disability

For each review carried out the level of learning disability for that person is confirmed and recorded as either mild, moderate, severe or profound/multiple. Table 3 shows the breakdown of this information for all of whom reviews have been completed within the last year.

**Table 3: Level of learning disability by number. and percentage**
Level of learning disability	Number in 2022 / 2023	Percentage in 2022 / 2023
Mild	12	16
Moderate	24	33
Severe	24	33
Profound / Multiple	3	4
Unknown	10	14

Age

All Adults with learning disabilities who died in 2022 / 2023:

There was a total of 109 deaths reported to LeDeR in 2022 / 2023.
The range of age at death was 4 years old to 94 years old.
The mean average age of death was 62 years old.
The median average age was 67 years old.

Women with learning disabilities who died in 2022 / 2023:

There was a total of 38 deaths of women reported to LeDeR in 2022 / 2023.
The range of age at death was 8 years old to 88 years old.
The mean average age of death was 64 years old.
The median average age was 65.5 years old.
Female life expectancy in the general population of NHS Surrey Heartlands is 85 years old.

Men with learning disabilities who died in 2022 / 2023:

There was a total of 71 deaths of men in 2022 / 2023.
The range of age at death was 4 years old to 94 yearls old.
The mean average age of death was 60 years old.
The median average age was 67 years old.
Male life expectancy in the general population of NHS Surrey Heartlands is 82 years old.

All Adults with learning disabilities who died from confirmed or suspected COVID-19 in 2022 / 2023:

There was only one death during 2022 / 2023 which was due to Covid 19.

**Table 4: Age range of the people whose deaths were reported to LeDeR**
Age Range	All	Female	Male
18-24 yrs	3	0	3
25-34yrs	2	1	1
35-44 yrs	4	1	3
45-64 yrs	33	14	19
65-79 yrs	25	13	12
Over 80 yrs	12	8	4

Children with learning disabilities who died in2022 / 2023:

There was a total of seven deaths reported to LeDeR in 2022 / 2023.
The range of age at death was 4 years old to 17 years old.
The mean average age of death was 11 years old.
The median average age was 13 years old.

Table 5 shows the number of children and young people who died in 2021 / 2022 and 2022 / 2023. There was three children and young people who died in 2021 / 2022. This is less than this year where seven children and young people’s deaths were reported to LeDeR. Six of them were boys and one was a girl.

**Table 5: Number of children and young people who died in 2021 / 2022 and 2022 / 2023 by gender**
	Number of deaths Male	Number of deaths Female	Total number of deaths All
2021 / 2022	2	1	3
2022 / 2021	6	1	7

Reviews relating to the deaths of Autistic people

Of the 109 notifications received between 1st April 2022 and 31st March 2023 only five related to Autistic people who did not have a learning disability.

None of the reviews for Autistic people, who do not have a learning disability, were completed within the reporting timeframe therefore there has not been any learning identified in relation to Autistic people who do not have a learning disability within this report.

Four out of the five notifications received have originated from the same acute hospital. This hospital has a process in place where the medical examiner triggers the requirement of the LeDeR notification.

This report shall recommend that health and social care providers review the processes in place to ensure that notifications are made to the LeDeR programme for autistic people.

Cause of Death

Of the 73 deaths reviewed in 2022 / 2023, the most common cause of death were deaths that resulted from a respiratory condition. 37% of all deaths were due to a respiratory condition. 18% (of the total no. of deaths) died of bronchopneumonia and 16% died of aspiration pneumonia. Table 6 shows the top five primary and secondary cause of death.

**Table 6: Most common causes of death**
No	Primary Cause of Death	No	Secondary Cause of Death
1	Respiratory conditions	1	Ischemic Heart disease
2	Cardiac conditions	2	Pneumonia
3	Infection	3	Down’s syndrome
4	Gastroenterological conditions	4	Frailty
5	Cancer / Pulmonary Embolism	5	Deep Vein Thrombosis

The second most common cause of death were deaths that occurred due to cardiac conditions, which accounted for 16% of the total number of deaths.

A further 10% of people died from an infection. 7% (of the total number of deaths) died from sepsis. Infection was the third most common cause of death.

The fourth most common cause of death was gastroenterological conditions (7%), 3% people died from gastrointestinal bleeds and 4% people died from bowel related conditions including bowel ischemia, bowel obstruction and a perforated bowel.

The joint fifth most common cause of death was cancer and Pulmonary Embolism which each accounted for 6% of the deaths.

DNACPR – Do not attempt cardio-pulmonary resuscitation

A ReSPECT form is a form that describes the clinical plan of care an individual will receive in an emergency, if they do not have capacity to tell someone what they would like at that time. ReSPECT stands for ‘Recommended Summary Plan for Emergency Care and Treatment’.

Learning was identified in relation to DNA CPR / ReSPECT decisions in 10 of the reviews completed. The most common theme identified from the learning was the quality of the completed ReSPECT form. Three reviews identified that the respect form did not have all sections completed within it and two reviews noted that the ‘about me’ section of the form contained the words learning disabilities before highlighting the person’s health conditions / needs. The second most common theme raised in relation to DNA CPR decisions was the Mental Capacity Act. This was identified within 4 reviews. Three reviews did not involve the families of the individual concerned. The last piece of learning relating to the Mental Capacity Act was specifically around the family being informed about the Mental Capacity Act.

Other themes identified were communication, timeliness of the decision / discussion, review of the ReSPECT decision and care staff’s understanding of what a ReSPECT decision involves i.e., it may not mean that treatment is not pursued if it relates to a reversible cause of death.

As a result of the learning from our last LeDeR report, Royal Surrey NHS Foundation Trust developed and undertook a ReSPECT audit for patients with learning disabilities. They used the learning from this to develop an action plan which they monitor in their learning disability steering group.

Annual Health Checks (AHC)

Of the 73 reviews completed last year, 55 people (75%) had received an annual health check. This is lower than last year where 83% of the deaths reviewed had had an annual health check. It is expected that this will rise again next year due to the ongoing work to increase annual health check uptake across Surrey Heartlands.

Of the people who did not receive an annual health check, only one person had declined, and one person was unavailable at the time of invite, it was recorded in 10 reviews that the person had not received an invite.

Of the 55 AHC’s carried out, 33 (56%) reported that it resulted in the completion of a health action plan. 15 reviews reported that the AHC was not felt to be effective. See table 7 for further details.

**Table 7: Reasons provided about why the AHC was felt to be ineffective.**
Reason why the AHC was felt to be inapropriate	No. Times Reported
Not enough detail	3
Not face to face	3
Did not address ongoing health issues	3
No Medication / STOMP review	2
Did not address escalation of care if the patient deteriorated	1
No physical examination	1
No actions identified (which were indicated as being required)	1

Note: STOMP is a national project to stop the overuse of psychotropic medicines. It stands for Stopping Over Medication of People with a learning disability, autism or both with psychotropic medicines.

A project to complete quality audits of AHC’s is underway and in the scoping phase during quarter one of 2023. This will include consideration of auditing on a rolling basis as well as a more comprehensive one-off audit as baseline.

Role of cancer screening

Screening uptake in the reviews carried out remains low as detailed in the table below. In response to this, NHS Surrey Heartlands have undertaken some work in this area. We have worked with the bowel hub to aid identification of people with learning disabilities. This has resulted in over 800 people with learning disabilities being flagged on the Surrey Bowel Hub information system and will help their service identify those who may require easy read materials to be sent out.

In addition to this, we are currently taking part in a national accelerator programme to aid early identification of cancer. This new NHS England programme is delivered in partnership with the Institute for Healthcare Improvement (IHI) and Health Foundation (HF) and aims to tackle local healthcare inequalities. It has been agreed that learning disabilities will form part of this work in response to the learning from LeDeR to date.

Table 8 shows the uptake of screening in more detail and broken down by each screening programme. It demonstrates that none of the women eligible for breast screening had it carried out, only 8 out of 31 people eligible for bowel screening had been screened for bowel cancer, only 2 women out of the 25 elegible women for cervical screening had received this, only 2 men out of 25 eligible for Abdominal Aortic Aneurism (AAA) screening, had been screened. Everyone who required diabetic retinopathy screening had received this.

**Table 8: Screening uptake in people with learning disabilities whose review had been completed.**
Screening type	Age range	People eligible	People received screening	People not attended	People declined	People where it was felt to not be in their best interest	Reasonable adjustments made
Breast	Women aged 50-70 yrs	9	0	3	2	2	1
Bowel	60-74 yrs	31	8	n/a	6	?	3
AAA	Men age 65+ yrs	25	2	?	?	?	1
Cervical	25-64 years	25	2	?	?	?	1
Diabetic eye screening	12+ years with diabetes (data 18+ years)	3	3	0	0	0	2

Action from learning and themes identified from local and national LeDeR reports

Initial findings from medication audit

In response to the learning around polypharmacy and constipation prescribing NHS Surrey Heartlands commissioned Surrey and Borders Partnership Trust’s pharmacy team to undertake an audit to understand this issue in more detail.

The audit aims were:

To review prescribing and completed medication reviews and health checks for people with learning disabilities and polyprescribing / polypharmacy (people on more than 10 medications).
To review prescribing and completed medication reviews for people with learning disabilities and with, or at risk of, constipation (prescribed drugs causing constipation include opiates, anti-psychotics, anti-depressants, anti-epileptics, antimuscarinics and antispasmodics).

The audit remains in progress at present however the initial findings from the pilot site are:

96% of people on the GP register had received their AHC.
26% of those individuals were on 10 or more medications.
58% of the individuals reviewed were at risk of constipation due to prescribed medications.
Some AHC questionnaires appear to identify constipation as an issue however the AHC does not appear to have addressed this.
Not everyone receiving treatment for constipation (32%) had this identified as a diagnosed condition within their medical records.
Dietary interventions in constipation management were not documented.
There was limited evidence of antipsychotic review and evidence of only one Positive Behaviour Support (PBS) plan within the documentation.
Some Health Action Plans were declined by the accompanying support staff.
There have been improvements in the coverage of AHC since the introduction of the Arden’s AHC template.

Going forward, the pharmacy team aim to undertake audits at more GP practices as a comparison and will detail their final findings in a report. They continue to liaise with NHS England in relation to the audit.

Additional findings noted from reviewing the AHC as part of the medication audit:

Terminology used within the AHC questionnaire in relation to constipation can be misleading and result in the carers responding ‘XXX is independent in using the toilet’. This does not answer the question and may require re-wording.
It was noted that abnormal ECG’s (electrocardiogram) did not always result in referral to cardiology or request for a review of psychotropic medications.
STOMP reviews were not carried out despite being indicated.
Lack of routine 6monthly dental check ups and annual / biannual vision checks (indicated given the medications prescribed).
One review noted the ‘acknowledgement of risk’ form had not been signed for a lady prescribed Valproate (medication to manage epilepsy).
Patient’s on psychotropic medication noted to be putting on weight yet no weight management referral / plan in place.
PBS plans not updated / communicated with GP.
Pop up system for prescribing prompts may need to be reviewed / updated as it does not appear to be updating.
Bloods not routinely done before AHC.
2nd AHC appts required due to the above / failed bloods etc.
Reasonable adjustments often not recorded on the GP system.

Supporting people to identify deteriorating health

NHS Surrey Heartlands commissioned Surrey Choices to deliver Restore 2 mini training to family and domiciliary carers of people with learning disabilities and autistic people to help identify and respond to deteriorating health. This training complemented the existing training offer to all nursing and residential care homes. The Restore 2 tool uses clinical observations however the Restore 2 mini can be used in environments where clinical observations are not available.

Progress to date includes:

Surrey Choices employed a Shared Lives carer to deliver the training courses.
They offered on-line or face to face training sessions in day times, evenings and weekends to suit carers needs.
Courses were offered free of charge.
150 family and domiciliary carers trained in the use of the Restore 2 mini tool to date.
The feedback received was positive.

Surrey Skills Academy are offering both Restore 2 training and Restore 2 ‘Train the trainer’ courses. At the time of writing, they have trained 32 people to date, 18 of whom attended the train the trainer course and can now deliver the training across their own organisation.

Further to this, Central Surrey Health have also been commissioned to deliver Clinical Observations training which includes RESTORE2 / NEWS2 training. Training dates have been offered throughout 2022 / 2023 and are fully booked. Additional training dates are being explored.

Mental Capacity Act (MCA)

It was noted that despite the current assurance processes in place regarding monitoring completion of MCA training, MCA compliance continued to be identified as a theme from LeDeR reviews. As a result, NHS Surrey Heartlands worked with the MCA lead system colleagues to review the MCA quality assurance processes in place and developed tools to support this. The tools included:

A basic knowledge and understanding of the Mental Capacity Act (2005) questionnaire to assess competencies.
A deep dive audit tool to review practical implementation and assessment of the Mental Capacity Act.
An Audit Tracker system to capture the detail.

This audit was developed in line with NICE Guidelines NG 108 Decision-Making and Mental Capacity (2018) and Nice Quality Standards published August 2020.

Choking

In response to the learning identified around choking, NHS Surrey Heartlands have:

Developed a consistent approach statement that can be used across NHS Surrey Heartlands to provide advice and support to care homes when organisations were looking into introducing or had purchased an anti choking device within their organisation.
In addition to this an improvement plan was developed for acute and community Speech and Language Therapy Teams (SALT) teams, to address the learning from Section 42 (Safeguarding) enquiries and LeDeR reviews in relation to choking incidents.
To cascade and highlight lessons learnt and reflective practice in relation to swallowing management incidences for care home- the ICB’s safeguarding advisor is currently working on a briefing paper and finalising a check list for care homes on how to monitor and review anyone with swallowing risk.
In addition to the above a 7-minute briefing is in development along with the creation of a flow chart for GPs to guide them through the SALT referral process for each system place.
A GP lunch and learn session is planned for the 24/5/23 to address choking incidents / management.

An example of a local social care provider taking action in response to the learning from LeDeR

The provider installed 2 defibrillator devices within their organisation. They also have a plan to introduce a third device.
The rate of pay for staff was increased to rely less on agency staff within their organisation.
An additional 11 support staff were employed which has reduced the agency use to date.
The provider has partnered with another provider to deliver twice monthly clinics by an epilepsy nurse specialist.
SUDEP (Sudden Unexpected Death in Epilepsy) risk assessments will be created / reviewed within the clinic.
Vagal Nerve Stimulators (VNS) will be reviewed routinely within the clinic for any residents and the findings will be communicated with the individual’s neurologist.
Clinical reviews will be carried out on site for anyone under one of the London neurology services.
Individuals under other neurology services will continue to be supported to appointments as scheduled.
Work will be undertaken to educate families around SUDEP / MCA
Staff team will be trained in the Restore 2 tool to aid identification of deteriorating patients.

Learning from national LeDeR reports

A service review of the learning disability liaison service is planned in 2023 / 2024.
A ReSPECT audit was carried out by Royal Surrey NHS Foundation Trust.
Work was carried out to improve communication of people with a learning disability who were due to have bowel screening. This resulted in over 800 people being flagged on the bowel screening hub’s electronic system as having a learning disability. Those individuals will now be sent easy read invitations for screening.
An event was held in 2022 to raise awareness of the learning from LeDeR in relation to constipation and propose best practice. This was jointly delivered by Surrey and Borders Foundation Trust’s community nurses, liaison nurses and NHS Surrey Heartlands. A further GP lunch and learn event is planned for Oct 2023.
Learning disability awareness training sessions were delivered to breast and diabetic eye screening services by the learning disability liaison nurses, Surrey and Borders NHS Foundation Trust.
The primary care liaison nurses, Surrey and Borders NHS Foundation Trust offer role modelling to support GP practices in setting up AHC clinics and undertaking the AHC. In addition to this, they continue to deliver spotlight training events on best practice in AHC’s and other themes arising from LeDeR.

Areas for improvement identified in recommendations from reviews where work is already in progress

Theme identified: End of life care was the most common theme identified in areas of learning / requiring improvement.

On going work: End of life care in people with learning disabilities forms part of the NHS Surrey Heartlands Palliative and End of Life Care strategy 2021- 2026. It addresses topics such as understanding the barriers to good end of life care, ensuring co-ordination of care and that staff have the specialist skills and knowledge to provide good end of life care.

Theme identified: Identifying deterioration was the second most common theme identified.

On going work: Restore 2 roll out is monitored through the care home operational group. Although deterioration did not form part of the LeDeR strategy, it is a theme that is monitored through the LeDeR business meetings.

Theme identified: Communication of need / Hospital Passport.

On going work: Use of the hospital passports has been identified in the LeDeR strategy and is promoted via the Learning disability and Autism hub on Surrey County Council’s website.

Theme identified: Annual Health Checks / Health Action Plans.

On going work: This work forms part of the Learning Disabilities and Autism Health Inequalities Board work plan and is monitored via this route.

Theme identified: Mental Capacity Act.

On going work: This work is monitored through the LeDeR business meetings and progress made on the LeDeR strategy.

Best practice and positive outcomes learned from the reviews

Reasonable Adjustments were most frequently reported as a theme in the good practice section of the reviews. It was identified in 18 reviews. One example was the use of a reasonable adjustments assessment which was completed as standard upon referral to the learning disability liaison service.

The second most common good practice reported was Quality of Care. There were multiple examples of good quality care ranging from the acute setting, care provided by social care providers, transition of care and community learning disability team care. This was identified in 16 reviews.

End of life care was identified in nine reviews as good practice. It was clear that having an end-of-life care plan resulted in a better identification of the individuals end of life wishes.

The joint fourth most common good practice theme identified was the Mental Capacity Act which was identified in six reviews. One example of good practice was when consent and capacity was clearly evidenced within the notes throughout the patient’s admission.

The joint fourth most frequent theme identified as good practice was the involvement of the learning disability liaison nurses and the positive impact this had on co-ordination of care, prompting MCA compliance and raising concerns regarding incidents.

The joint 5th most common themes identified as good practice were Assessment of Need, Annual Health Check / Health Action Plan and Communication.

Learning themes identified from the deaths of children and young people

During the 2022 / 2023 period there were 4 child death reviews completed relating to children with learning disabilities. The themes identified in relation to areas of improvement follow.

Advanced care planning

It was noted that advanced care planning would have been beneficial and prevented distress to the child and family.

It was also noted that clinicians would benefit from further training in reduced life expectancy in children with significant neuro-disability.

Decision making

Learning was identified in relation to health and social care services working in partnership when delivering joint care packages as opposed to working in isolation.

It was identified that medical clinicians can struggle to get hold of someone within social care services in a timely manner to obtain consent when a child under a full care order. A clear escalation process should have been in place to support decision making.

Support services available

It was noted that there is an inequity in terms of access to learning disability liaison services for children / young people under the age of 18 years old as not all local hospitals have a children’s learning disability liaison service.

In addition to this, children are not always identified within the hospital flagging / alert system as having a learning disability or requiring reasonable adjustments.

Covid

It was clear that Covid greatly impacted children with complex needs / disabilities.

The impact of shielding was social isolation however it was also identified that the inability to access their usual services / activities also resulted in a decline in some children’s function.

Covid restrictions resulted in some families having to have difficult discussions around end-of-life care with clinicians via zoom.

Safeguarding

Learning was identified around the recognition of families experiencing carer strain and nearing crisis point.

In addition to this it was also recognised about the importance recognising how alcohol / drug use can impact upon attendance at child health appointments and how children can be protected from becoming lost to follow up.

Clinicians need to understand the impact of and recognise the multiple health appointments and wide geographical area these take place across and the impact this can have on families and support management of this.

Recognition of the importance of good communication across multiple health teams involved to ensure a good understanding of the whole picture to aid identification of coping and a good support plan.

Good practice was noted in the following areas

A sibling was identified as a formal carer.

Reasonable adjustments were made by delivering a clinic appointment at home to try to build a relationship with the family.

Areas for improvement identified in recommendations from reviews

There is an inequity in the flagging / identification of children and young people who have learning disabilities when they access acute hospital services and the provision of learning disability liaison support across all hospital sites.
People with learning disabilities continue to face inequalities due to delays, non-compliance, capacity issues, disengagement from services or becoming lost to follow up.
Epilepsy care was identified in five reviews as an area requiring improvement. Findings included, essential epilepsy medication not being administered when the individual was made nil by mouth, effective seizure detection equipment / monitoring not in place, families are not always included in neurology consultations if there is a care provider present (this may indicate the Mental Capacity Act is not being followed), families are not always informed about SUDEP (Sudden Unexpected Death in Epilepsy).
Pain identification was identified as a recurring theme in five reviews. Most reviews specified that the patient’s pain was not acknowledged and acted upon, resulted in a lack of action taken in response.
Further work is required to address the inequality in screening uptake in people with learning disabilities. NHS Surrey Heartlands are part of an NHS programme to improve early identification of cancer / reduce late diagnosis.
Deaths from cardiac conditions were the second most common cause of death in people with learning disabilities.
There were four people who died from a Pulmonary Embolism.

Local Priorities for delivery in 2023 / 2024 based on the local and national learning

The liaison service review should consider the need for liaison services to support autistic people and children with learning disabilities and autism. In addition to this service provision across community / specialist hospital settings should be considered.
Consideration should be given to the development of a complex care pathway for people at risk of deteriorating health, disengagement or becoming lost to follow up.
Funding should be made available to employ an interim post to undertake completion of the Rightcare Epilepsy Toolkit across NHS Surrey Heartlands. This will allow the system to understand their priorities in epilepsy care and key actions required.
Providers should review the pain assessment tools used for people with learning disabilities and autistic people.
The NHS Health Inequalities Accelerator Programme will consider alternative ways to reduce late diagnosis in cancer in people with learning disabilities such as improving screening uptake / HPV vaccine uptake. Any learning should be communicated and applied to the other national screening programmes, as appropriate.
The learning from LeDeR should feed into the system work in relation to heart failure to ensure consideration of adaptations to the programme to include people with learning disabilities and autistic people.
There were 4 people who died from a Pulmonary Embolism. Education should be provided to people with learning disabilities and social care providers on reduced mobility and associated risk of Deep Vein Thrombosis / Pulmonary Embolism.
All providers should review the processes they have in place to ensure that the deaths of Autistic people are reported to LeDeR.
All providers should maintain an action plan in response to the learning from LeDeR to enable tracking of action taken.

Questions

Thank you for taking the time to read our report. If you would like to talk to us about our work, please contact us on:

syheartlandsicb.leder@nhs.net

NHS Surrey Heartlands LeDeR Team