1. The care of adults with a Learning Disability at St George’s Hospital
A presentation to the Merton Patient Engagement Group
Padraic Costello, Learning Disability CNS
St Georges University Hospitals NHS Foundation Trust
19th September 2018

2. An Overview of the past present and future
Exploring recent history in acute settings
Reflecting on services at St George’s today
Highlighting Challenges and Successes
Looking forward

3. Why focus on PLD in acute hospitals?
‘Death by Indifference’ MENCAP (2007)
Sir Jonathan Michaels Independent Inquiry (2008)
‘Six Lives’ (2009)
‘Death by Indifference: A progress report 5 years on – 74 Lives and Counting’ (2012)
‘CIPOLD’ (2013)
Treat Me Well (2018)

4. Findings from National Reports and Investigations
Lack of appropriate admission planning
Omissions in delivery of care
Poor information sharing
Failure to understand the law
Inadequate discharge planning
Premature death in hospital

5. Criteria for seeing patients
A Learning Disability is defined as:
A reduced ability to understand new or complex information, to learn new skills (impaired intelligence, usually associated with an IQ below 70)
A reduced ability to cope independently (impaired social functioning)
Which started before adulthood, with a lasting effect on development
DoH 2001 – Valuing People

6. What happens at St George’s
Employment of two learning disability nurses
Posts commissioned by Wandsworth CCG
Under the umbrella of Safeguarding Service
Accessible to all SGH adult wards and departments
Available Monday to Friday 8am to 5pm

7. Core Elements of Service
To ensure a safe pathway of care for PLD
To facilitate reasonable adjustments
To liaise with internal and external services
To coordinate best interest decision making meetings
To raise awareness of the needs of PLD in a hospital setting

8. Referral System Referrals accepted by telephone/email
Accepted from any source
Majority referrals are internal (A and E, OPDs, wards)
Other referrals from London and beyond (CLDTs, other hospitals)
26% referrals relate to Merton residents
Occasional inappropriate referrals

9. Responding to Referrals
Contact with the local CLDT
Request for Hospital Passport/Care Plans
Review of risks with suggested interventions
Initial screening if patient is not known
Planning with MDT

10. Examples of a Reasonable Adjustment
Providing Accessible Information
Securing a Side Room
Offering a First or double OPD appointment
Coordinating multiple treatments
Promoting flexible visiting hours
Organising an overnight stay for carers
Facilitating pre planned visit to ward/department

11. Hospital Passport

12. Working with Families, Carers and Partners
Facilitating Effective Communication
Obtaining collateral to inform care plan
Providing emotional support
Supporting the patient in making decisions
Assisting clinicians in making BI decisions

13. How are concerns being addressed now?
Patients seen at the point of admission
Direct Link to Pre Op Care Centre
Obtaining collateral from other sources
Emphasis on the Mental Capacity Act
Early contact with Discharge Facilitators
Requesting the deferral of discharge

14. Elements of Success Very low readmission rates for PLD
One formal complaint about patient care in 5 years
No serious untoward incidents
No known avoidable deaths
Many expressions of gratitude

15. Referral Rates

16. Potential Challenges Ahead
Managing PLD with complex health needs
Devising a Meaningful Flagging System
Meeting RCN recommendations by 2020
Sustaining a developing Liaison Service (321% increase in referrals in 4 years)

17. Planning for the Future
Placing more responsibility on clinical staff
Adapting the Friends and Family Test
Participating in Clinical Audit
Accessible Complaints Procedure
Conversations with commissioners

18. Patient Story 19 Year old female with autism and humeral fracture
Reviewed with parents by Orthopaedic Consultant
Surgical intervention proposed
Parents oppositional for many reasons
Patient was not in any apparent distress
Best Interest discussions and conservation agreed
X Rays and orthopaedic reviews every 2 months
Fast tracking through each department
Full healing after 8 months without need for surgery

19. References and Further Reading
Abraham, A. (2009) Six Lives: the provision of public services to people with learning disabilities London: The Stationery Office
Heslop, P; Blair, P; Fleming, P; Hoghton, M ; Marriott, A; Russ, L. (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) Final Report. University of Bristol
Department of Health (2010a) Making written information easier to understand for people with learning disabilities Guidance for people who commission or produce Easy Read information – Revised Edition. London. Department of Health
Disability Rights Commission (2006) Equal Treatment: Closing the Gap A formal investigation into the physical Health Inequalities experienced by People with Learning Disabilities and/or Mental Health Problems. Stratford upon Avon: Disability Rights Commission
Emerson, E. and Baines, S. (2010) Health Inequalities and People with Learning Disabilities: Improving Health and Lives. London Learning Disabilities Observatory
Emerson, E. and Baines, S. (2010) Health Inequalities and People with Learning Disabilities in the UK: Tizard Learning Disability Review, 16: 1 pp
Gaskell, S., Nightingale, S. (2010) Supporting people with learning disabilities in acute care. Nursing Standard. 24 (18) 42 – 48
Mencap (2007) Death by Indifference. London: Mencap
Mencap (2012) Death by Indifference: 74 deaths and counting: A progress report 5 years on. London: Mencap
Michael, J., (2008) Healthcare for All: Report of the Independent Inquiry into access to Healthcare for People with Learning Disabilities. DoH: London
Mencap (2018) Treat Me Well; Simple Adjustments make a Big Difference. London: Mencap

20. Please feel free to ask a question

22. Contact Details
Padraic Costello Clinical Nurse Specialist, Learning Disabilities
Tel: