Trust Board Report in Response to the Report of the Independent Inquiry into Access for People with Learning Disabilities (Sir Jonathan Michael July 2008)

  1. Background
  2. As a Trust we demonstrated commitment to the improvement of care for our patients who also happen to have a learning disability. Our Charitable Trustees funded a Learning Disability project nurse in 2003. The outcomes of the project included a resource folder for clinical staff and a website. During the project training was delivered and the needs of a caseload met.

1.2We now have a Learning Disability nursing service that consists of a part time Specialist Nurse supported by a part time Learning Disability Liaison nurse totalling the hours of one post. These positions were funded initially by ‘people first’ money via Bristol Primary Care Trust with the expectation that the acute trust would continue to fund. The posts are currently funded from the Chief Nursing Officers budget until March 09.

1.3The service has been extremely effectivefrom a clinical governance perspective. The nurses mitigate risk, improve knowledge in teams and support highly complex patients and their carers, plus ensure seamless care with community services. Teaching for all staff and all professions is a vital part of the role in order to improve the care we offer.

1.4It has not been possible to demonstrate direct savings in length of stay, and realistically any length of stay savings are an additional bonus. The nurses have avoided the occasional admission or failed day case attendance through better planning.

2. The Learning Disability Health Need

2.1It is well recognised that people with learning disabilitieshave poorer health in comparison to the general population and face many inequalities in accessing health care. They have a significantly lower life expectancy and are four times more likely to die of a preventable condition.Approximately 2.5% of the population will have a learning disability. They are not a homogenous group of people but represent individuals with a wide diversity of need. Whilst their numbers are relatively small they have much higher admission rates to hospital than the general population - 26% versus 14%. People with a learning disability present many problems and challenges when coming into hospital. Their needs are likely to be complex and being in hospital makes someone with a learning disability very vulnerable for a number of reasons including:

2.1.1Communication difficulties – 90% of people with a learning disability will have a communication problem meaning it is harder for someone to ask for help, describe symptoms, express pain etc.

2.1.2Different pattern of health needs than the general population – respiratory disease being the main cause of death followed by heart disease normally in association with congenitalheart disease.

2.1.3Health needs that are specific to people with a learning disability and may be poorly understood by general health care staff e.g. dysphagia can affect up to 90% of people with a severe learning disability. Epilepsy occurs in up to 30% of people and may be complex. Higher risk of gastrointestinal cancer in people with Down’s syndrome

2.1.4High prevalence of physical and sensory disabilities. Up to 1/3rd of people will have a physical handicap most commonly cerebral palsy.

2.1.5Anxiety and fear can manifest in behavioural difficulties leading to high risk situations for the patient as well as others

2.1.6Presence of factors which are linked with increased risk of hospital acquired infection i.e dysphagia, dependent functional status. People with Down’s syndrome will have lowered immune systems.

2.1.7Being in hospital removes people from family and carers who are familiar to the patient and their nuances. 60% of people with learning disability live with families, many of these will be elderly carers who will not necessarily be able to accompany their son/daughter to hospital.

2.1.8In recent years there has been much attention paid to the care of people with learning disabilities within acute care settings and evidence has shown that often this group of people can experience sub optimal care.

3. Independent Inquiry

3.1Sir Jonathan Michael’s report[1] followed on from Mencap publishing ‘Death by Indifference’ in 2007[2]. The Mencapreport raised serious concerns about the quality of care afforded to people with a learning disability in acute care settings.

5. The recommendations relevant to University Hospitals Bristolwhere we meet them and the gaps.

Recommendation / Current work / achievements against the recommendation / Gaps
1Mandatory training in learning disabilities at both undergraduate and post graduate clinical training.
(Limited knowledge among healthcare staff and health problems and risks are poorly understood) / Raising Awareness sessions with a variety of groups of staff e.g. Junior Doctors
Teaching clinical teams as patients present
Learning from high risk incidents e.g. Division of Medicine Mortality and Morbidity (M&M) meeting
All achieved on 1 WTE / Systematic delivery of training to all staff with direct patient contact at different levels from awareness to more detailed requirements delivered in a way that will have the most impact.
Training to include children’s hospital staff
2Data collection relating to people with learning disabilities
(To allow people with a learning disability to be identified by the health service and their pathways of care tracked, GP responsibility) / PAS alert for all adult patients known to Learning Disability (LD) nurse.
Data base of adult patients known to the LDnurse; length of stay, outcomes, and episodes of care accessible / GP data collection and health reviews now funded but in early stages
Community teams have their own data base that captures approximately 1/3 of the Bristol LD population we don’t currently have access however, when they change to social caresystem we will have access.
No way of capturing information about those patients the LD nurses don’t see / are not referred to them who use the services of the Trust. Children’s hospital not covered by the LD nurses
A screening tool for adults in development that will require training of staff and resources to follow up referrals afterwards in order to ascertain a definitive diagnosis of LD or not.
3Involvement of family and other carers as a matter of course
(Parents and carers often find their opinions and assessments ignored by health care professionals even though they have the best information available.) / Inclusion and support when LD nurse involved.
Awareness and involvement of Matrons
Good examples of involvement in planned care
Carers involvement work planned, to include parents / carers of patients with Learning Disability / Parents and carers of adult patients often report to the LD nurse that they don’t feel listened too, this needs to be improved
Work is needed on transition, to develop skills of our healthcare professionals in adult services
  1. To raise awareness in the health service of the risk of premature avoidable death (relates to DOH)
/ Within the Trust where incidents have occurred involving patients with a learning disability there are investigations, reviews at the M&M meetings, clinical Governance forums. / Awareness raising relates to recommendation 1 and the need for training
Need an internal communications plan
  1. Supporting appropriate reasonable adjustments to general health services for adults and children with a LD – ensuring compliance with and enforcement of all aspects of the Disability Discrimination Act
The report highlights that no indicators exist specific to the needs of people with a learning disability. There are no Nests in place or targets. / Within our Trust some of the systems such as nursing documentation are generic and do not take into account LD specific needs and health risks. The LD nurses have designed a risk assessment and dependency tool to be piloted in order to highlight specific needs and risk areas.
In some cases due to a high level of vulnerability or dependency extra support will be required for some patients whilst in hospital. / Some of our systems and processes need adjustment to facilitate the needs of people with a LD, e.g:
  • One stop surgical pre assessment clinics where consent is obtained on the same day isnot appropriate for patient’s who lack capacity as best interest meetings will be required as well as involvement perhaps from an IMCA as a requirement of the mental capacity act.
  • The 2 hour target for A&E may not be realistic for someone with a communication difficulty and complex needs.
  • It should be the norm for allowances to be made to allow carers to accompany patients for investigations in order to reduce anxiety, e.g. endoscopies.

  1. Need to consult and involve patients and the public in the planning and development of services
/ LD Nurse attends the community Partnership Board health meetings where there is also representation from service users, carers and parents.
We know we have some members who have LD’s.
The benefits of their membership is the opportunity to listen to their views and involve them in planning of services. / At a recent meeting a need for more pictorial information was identified in respect of signs around the hospital and on menu cards.
  1. Providing advocacy and arrangements to secure effective representation on PALS.
/ It is a requirement of the mental capacity act that patients lacking capacity with no family or other significant involvement have an advocate. This is recognised and facilitated when necessary.
LD Nurses have good working relationships with the PALsservice. It is our experience that patients and carers use PALs and don’t use the formal complaints system.
We have Members with learning Disabilities and had good engagement in the consultation process. / We should consider representation on the PPI forum

5. Summary

5.1People with a Learning Disability present many challenges when coming into acute care and their needs are likely to be complex. Their pattern of health needs is different and this needs to be understood.

5.2Awareness about the vulnerability of this group when in acute care must be continually raised and we must recognise that reasonable adjustments will be necessary in certain cases to provide safe delivery of care.Improving the quality of care for this group of people is everyone’s responsibility.

5.3We have not managed to secure ongoing funding for the Learning Disability nurses, the two part time nurse amount to one whole time equivalent for the entire Trust. Securing at least this post would go a long way to ensuring that we continue to make good progress with the recommendations

6.2Work on transition from children’s services to adult care must include the specific needs of patients with complex learning disabilities.

The Board is asked to note the recommendations of the Michael Independent Inquiry that apply to acute Trusts and consider the appropriate next steps.

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[1] Sir Jonathan Michael (July 2008) healthcare for all ; report of the independent inquiry into access to healthcare for people with learning disabilities. Aldridge press, London

[2] Mencap(2007) Death by Indifference. Mencap, London