Primary Care
Learning Disabilities annual health check programme
How to Guide
The former Public Health Wales Primary Care Quality Team, now incorporated within the Primary and Community Care Development and Innovation Hub, developed a series of quality improvement toolkits to assist practices in collating and reviewing information. From information received, practices still find these toolkits useful, therefore they will remain on this webpage for your ease of reference. Please note, however, that the date of publication is clearly stated in the toolkit and that the evidence within may have changed since publication.
This guide has been produced to enable GP Practices and their teams to successfully implement a series of care bundles in a timely manner and apply the Model for Improvement when managing patients with Learning Disabilities (LD)
There is a summarised version of this document which can be accessed at
Final
January 2014
Acknowledgements
This guide has been produced by Primary Care Quality, Public Health Wales with input from Professor Mike Kerr Consultant in Learning Disability Psychiatry, Judith Tomlinson Public Health Specialist and 1000 Lives Plus Programme Manager for Learning Disabilities and the Change Agent Team at the National Leadership and Innovation Agency for Healthcare. It is based on work undertaken by Public Health Wales and the Welsh Centre for Learning Disability (WCLD) by Professor D Felce and Dr J Perry.
We would like to thank Health Boards and GP Practices in Wales and their teams for their endeavours in implementing these interventions and also feeding back lessons and experiences gained.
PCQ and 1000 Lives Plus have successfully engaged with a number of experts in Primary and Secondary care to produce this guide for Learning Disability. It has been developed by specialist practitioners in Wales and the content based on evidence and recommendations from Linehan C et al Final Report POMONA Health indicators for People with Intellectual Disability in the Member States 1 , Learning Disability Strategy Welsh Assembly 2 , Raising the Standard. The Revised Adult Mental Health NSF and Action Plan for Wales Welsh Assembly 3 , Health Evidence Bulletin Wales Support implementation of Raising the Standard 4 , Equal Treatment: Closing the Gap. Disability Rights Commission 5 , Monitoring the public health impact of health checks for adults with learning disability in Wales 6 , PCQ Quality Improvement Toolkit Learning Disability DES 7 , General Medical Service Contract 2011 / 12 8 , RCGP Annual Health Checks for people with Learning Disability 9 , RCN Dignity in Healthcare for people with learning disability .10
We wish to thank and acknowledge the Institute for Healthcare Improvement (IHI) and the Health Foundation for their support and contribution to 1000 Lives Plus.
Date of publication and Proposed Review Date
This guide was published in November 2013 and will be reviewed in November 2016. The latest version will be available online on the programme’s website:
Purpose of this ‘How to’ Guide
The aim of this guide is to assist practices to review the quality of the service that they provide to Learning Disability patients.
It has been produced to enable GP practices and their teams to successfully implement a series of care bundles in a timely manner, and to improve the safety and quality of care that their patients receive.
The ‘How to’ guide must be read in conjunction with the following:
- Leading the Way to Safety and Quality Improvement
- How to Improve
The Quality Improvement Guide
Further information is also available to support you in your improvement work:
PCQ site
Deanery Site The new GP Appraisal & CPD website can be found here;
1000 Lives Plus 14 Cathedral Road, Cardiff CF11 9LJ | Tel: (029) 2022 7744
Email: | Web:
Twitter:
Foreword
All general medical practices will have patients with Learning Disability (LD). Research has shown that management improves quality of life and prolongs life. Guidelines have been published to help us deliver those treatments. However, we know that not all eligible patients are receiving adequate management.
This guide, and its associated collaborative programme, aims to put that right by encouraging and supporting primary medical care teams to examine the care they provide, reflect on their services and try different approaches as necessary to improve.
The 1000 lives plus approach requires practices to design their processes to meet the needs of their patients in ways appropriate to their circumstances by considering their own data and comparing it with what they would wish it to be. It encourages practices to compare themselves with others and learn from what others have done. Similarly it asks participating practices to share their learning with others.
This How to Guide is specifically aimed at general medical practices. It is concerned with an area where we know collectively we can do better. It relies on us to work constructively with our secondary care colleagues. It puts responsibility on all of us in the general medical practice team to improve.
Paul Myres
Primary Medical Care Lead
1000 lives plus
Chair
Royal College of GPs Wales
Short statement on epidemiology
Identifying eligible patients for Health Checks. The Health Check DES states that eligibility for a health check is strictly confined to those of your patients who are on the social service register. The reasoning behind this was largely to ensure a link between health and social care; and the majority of practices will have formed close links to community learning disability teams. Many of whom will be supporting the health check process. The downside of this stipulation is when practices identify patients who appear to either clearly, or possibly, have a learning disability and would benefit from a health check but are not on the social service register. When such individuals are identified the best process is to discuss with the patient/family if they are happy for you to refer to the local learning disability community teams for assessment of eligibility. Such referrals are pretty much the norm and should be allocated and dealt with efficiently.
The outcome could be acceptance on to the social service register and associated support. Where an individual has carers even if the person does not qualify for services the carers will qualify for a carer’s assessment that could lead to further support.
What are the expected numbers of patients with LD per GP? The epidemiology of LD has notorious pitfalls, the main one being the IQ definition, based on the 2.5% of the population with an IQ under 70. This is only part of the LD definition which includes onset in the developmental and problems with adaptive behaviour. In fact no study identifies a prevalence of 2.5%, as the bulk of this group have mild LD without obvious difficulties with adaptive functioning. Most studies that try and find people with ID find a prevalence of about 0.6%. This is very similar to the prevalence of severe LD but will be a mixture of people with more recognisable severe LD and those with milder LD with associated behavioural or neuropsychiatric illness, or in fact a very recognisable causation such as Down syndrome.
So when we look at a typical GP list size of about 1600 for Wales one could expect a minimum of identifiable patients with LD of all ages of about 10, as 60% of the population are of working age then about 6 adults will be identified. There are other factors that can cause large local variation such as the presence of several community homes in a practice area and smaller variation such as deprivation.
This calculation compares very well with English data GPs in 2010 recognised 4.2 adults with a learning disability per 1000 population.
Professor Mike Kerr
Consultant in Learning Disability Psychiatry
Making Patient Safety a priority
The 1000 Lives Campaign has shown that by working as a collaboration it encompasses not only health services within secondary care organisations but also community based alliances from health clinics and associated general practices who together support mutual aims: the avoidance of unnecessary harm, improvement to services that are delivered and an evidence-informed approach with patient safety as a priority.
The enthusiasm, energy and commitment of teams to improve patientsafety by following a systematic, evidence-based approach has resulted in manyexamples of demonstrable safety improvement.
However, as we move forward with 1000 Lives Plus, we know that harm anderror continue to be a fact of life and that this applies to health systems acrossthe world. We know that much of this harm is avoidable and that we can makechanges that reduce the risk of harm occurring. Safety problems can’t be solvedby using the same kind of thinking that created them in the first place.
In General Practice the field of patient safety has tended to focus on adverse events and on the development of specific solutions aimed at preventing these events. We know that much of the harm is avoidable and that changes in practice and procedures can reduce the risk of harm occurring. Developing a positive safety culture depends on communication between all members of the health care organisation. The health care organisation needs to:
- Acknowledge the scope of the problem and make a clear commitment to change.
- Recognise that most harm is caused by bad systems and not bad people.
- Acknowledge that improving patient safety and outcomes requires everyone on the health care team to work in partnership with one another, patients and families.
The national vision for NHS Wales is to create a world-class service by 2015; one which minimises avoidable death, pain, delays, helplessness and waste. The guide is grounded in practical experience and builds on learning from organisations across Wales. The National Patient Safety Agency Seven Steps to patient safety in general practice guide describes the key steps for a general practice to take to avoid harming the patients they care for.
Contents Page
Foreword 3
Short statement on epidemiology 4
Introduction 7
Driver Diagram 11
Getting Started 12
Drivers and Interventions 13 - 16
How do we introduce changes to processes? 17 - 18
How do we measure for improvement? 19 - 23
References 24
Appendices
A. Setting up your team 25 – 26
B. Model for Improvement Driver Diagram 27
C. How to test change(PDSA) 28
D. Process Measures 29 – 33
E. Relevant READ Codes 33 - 38
F. Learning Disability Annual Check Programme 39 – 41
G. Welsh Health Checks for Adults with LD 42 – 49
H. Resources 50
Introduction
Aim: To increase uptake and full completion of the All Wales Annual Health Check (AWAHC) for people with learning disability (PWLD)
Health inequalities and inequities experienced by people with learning disabilities have been well documented.6
For example, people with learning disabilities have health conditions such as epilepsy, sensory impairment, respiratory problems, mental illness, autism, challenging behaviour, dental problems and incontinence more often or more seriously than the general population.1,6,8
They are at significant risk of deviating from normal weight and of leading sedentary lives. Although life expectancy of people with learning disabilities is longer than in the past, it is below that of the general population.6
They are more likely to have untreated morbidity and less likely to experience health promotion and disease prevention activities than the general population.6
The barriers to high quality primary care include communication difficulties, the off-putting nature of some behavioural difficulties and lack of specialist GP training on the particular needs of this population, including how to communicate effectively.2,6
The Welsh annual health check for adults with learning disabilities was specifically introduced in Wales in April 2006 as a Directed Enhanced Service (DES)8to promote early detection and treatment of health problems in people with learning disabilities. This check includes basic demographic information and key health and social care contacts; immunisation and routine screening uptake; history of chronic illness; a systems enquiry of the respiratory, cardiovascular, abdominal, CNS, genito-urinary and gynaecological systems, epilepsy and behavioural disturbance; a physical examination of the aforementioned ‘systems’ as well as vision, hearing, mobility and communication; a syndrome-specific check and a medication review.6
The impact of delivering evidence-based care
Regular health check screening can detect unmet health needs, but as people with LD rely on health management by proxy – through a family carer or support worker there are many potential access barriers.1There is strong evidence that people with learning disabilities have poorer general health and more specific health needs than the general population.2 Published in October 2005, ‘Raising the Standard’, the Revised Adult Mental Health National Service Framework and Action Plan for Wales (NSF) Standard 7 key action 3 3states thatsome people with mental health problems need particularly responsive services and information. These include individuals with other concurrent needs, for example those with a physical or sensory impairment and / or learning disability. The Health Evidence Bulletin Wales 4 indicates that there is increased illness in a number of areas, problems with hearing, eyesight, epilepsy, thyroid disorders, heart disorders and dental problems.
The role of Primary Care in delivering improvement
Primary care based adult annual health checks for people with learning disability were introduced in Wales in 2006,6 under a Directed Enhanced Service (DES). The service was designed to address the inequalities in health care experienced by people with learning disabilities. The Welsh Health Check for Adults with LD was derived from the Cardiff Health Check developed by Kerr et al. 6 Variation in the uptake of Health Checks across Health Boards (HB) in Wales is greater in some areas than others. In some HB areas more health check invitations were issued than there were people on the register indicating that health checks were sometimes offered to LD people who did not have a LD severe enough to warrant being on the social services register.6
An Evidence Based Quality Improvement Toolkit 2008, was implemented to compliment the DES and support the health check and available on the PCQ website.7
The GMS contract has lead to positive changes in primary health care however, there are still considerable improvements in access to primary care services for people with learning disabilities.5
Access to Audit + LD module to support practices in data collection and quality improvement by extraction of data on the health status of people with LD has lead to improvements in the health process experienced by people with LD in a primary care setting.6
Data Quality System (DQS) in Wales and Audit+
In November 2007, the Welsh Assembly Government’s Primary Care Informatics Programme (now part of NHS Wales Informatics NWIS) launched the Data Quality System (DQS). This was a natural progression from previous initiatives with the aim of providing an efficient, automated and consistent software tool, primarily to support General Medical practices and as a by-product support the bigger picture within Wales.
The DQS comprises of a General Practice based tool, ‘Audit+’ and a secure central NHS Wales-based web repository ‘Audit Web’ which receives scheduled automated aggregate data submissions from Audit+.
Participation in the DQS within Wales is voluntary; Audit+ is provided free to all General Practices in Wales irrespective of their clinical information system and is now deployed in 97% of General Practices. To ensure continued acceptance from practices, reflected in continued high level of participation, the development and implementation of all modules is discussed with General Practitioners Committee GPC (Wales) representatives to guarantee ongoing professional approval. NWIS works closely with Public Health Wales and other key NHS organisations to produce modules within Audit+ including amongst others:
- INR Monitoring
- Minor Surgery
- Learning Disabilities
- Near Patient Testing
- QOF age/sex standardised prevalence
- Flu vaccinations
- Pneumococcal vaccinations
- Communicable diseases
- CHD National Service Framework
- Diabetes National Service Framework / Directed Enhanced Service
As is the case with any software product the results produced are only as good as the source data supplied. Audit+ therefore contains specific searches within other modules to encourage General Practices to improve the data quality within their clinical system that supports their day-to-day activities.
The 1000 Lives Plus programme will monitor a small section of key health indicators using READ coded data electronically captured from the Audit + learning disability module. Other areas not available in Audit + will be captured using an online form.
These indicators have been selected as they are evidence based areas of high morbidity or health disparity for people with learning disabilities and where significant improvements to health can be made.
These indicators include:
- having a health check
- having a BMI taken
- having a blood pressure taken
- having seizure frequency recorded
- having a cervical smear
- having seasonal flu vaccination, if in risk group, recorded
- having a medication review
- having a self management plan (not available in audit +)
To help improve the quality of primary care data (and enable easy electronic data collection) the 1000 Lives Plus learning disability programme has READ coded the entire learning disability health check and developed READ coded data entry templates for (IPS Vision, EMIS LV, EMIS PCS). These will be supplied free of charge when practices register their interest in being part of the 1000 Lives Plus learning disabilities programme.
It is essential that all GP practices taking part in the 1000 Lives Plus programme use the data entry templates as they enable anonymised data to be electronically extracted from the Audit + learning disability module.
The 1000 Lives Plus learning disability programme manager will extract data about the percentage of people eligible for an annual health check who actually receive 1 to 7 of the key indicators (see above) i.e. every 3 months. It will be aggregated by GP locality and Health Board (HB) and electronically fed back to all participating practices.