1. Michael McCue Joint Improvement Team Action Group
‘Complex Needs Supports – Working Together’ JIT/MHD Regional Event Beardmore Hotel and Conference Centre, Glasgow
Michael McCue
Joint Improvement Team Action Group 1

2. Introduction and Scene Setting
National Working Group –
Service Modelling Exercise
Key Service Characteristics
JIT Capacity for Change Programmes
Related Work-streams ;
N.E.S / M.C.N./ S.A.Y.I.G./ P.M.L.D./ Service Transitions / Future Service Demand

3. Learning Disabilities Complex Needs
ISSUES OF TRANSITION
for young people with learning disabilities plus other complex needs
Dr Sally Cheseldine
JIT Associate

4. "Why is it so difficult to put (good transitions) into practice"
Mittler, 2007.

5. Who?
What does a good Transitions Process look like? What range of services is required?
Who pays?
Evaluation and review

6. Issues: Consistency of definition; Age cut off
WHO?
"LD plus complex needs"
Issues: Consistency of definition; Age cut off
Robust data; Out of area

7. National/local agreement on definition Sharing information
WHO? - RECOMMENDATIONS
National/local agreement on definition
Sharing information
Health Boards responsible for regional data
Forward planning/role of Public Health

8. ONE plan: Start at 14th birthday Named person in C/F & Adult services
WHAT DOES IT LOOK LIKE?
ONE plan: Start at 14th birthday
Named person in C/F & Adult services
Annual reviews/planning meetings
Good communication/information
Clear budget plan
Examples of good practice

9. Information for families User involvement Adult services MUST engage
SO:
Clear Pathway
Funding clarity
Information for families
User involvement
Adult services MUST engage

10. Jointly funded; local; Person-centred; effective Trained workforce
RANGE OF SERVICES:
Jointly funded; local;
Person-centred; effective
Trained workforce

11. Move from out-of-area: Bridging?
FUNDING?
Move from out-of-area: Bridging?
Innovation
Rainy-day pot?

12. Key service characteristics
EVALUATION & REVIEW
Key service characteristics

13. Changing Demography of people with learning disabilities
MANAGED CARE NETWORK
Changing Demography of people with learning disabilities
Dr. Michael Brown
Lecturer and Nurse Consultant
Edinburgh Napier University
and
Elaine Kwiatek
Project Manager
Learning Disability MCN

14. Aims of the presentation
Overview of demographics issues
Overview of health needs evidence
Workforce issues
Challenges and opportunities for the future

15. The wider determinants of health

16. Wider issues – Poverty & learning disabilities
‘Poverty can increase the risk of a child having an impairment… Having a disabled child can also mean that parents find it harder to maintain full-time employment, their housing can be inadequate for their child’s needs, and expenditure on basic needs is increased.’
Prime Minister’s Strategy Unit, 2005

17. Changing demographics of the learning disability population
Estimated 120, 000 children and adults with intellectual disabilities in Scotland – few ever in hospital
Projected 11% increase over next 10 years
Increasing learning disability subpopulation
Ageing learning disability subpopulation
Increasing number of people with complex learning disabilities
People with learning disabilities have greater health needs
Health inequalities exist and need to be addressed
Health needs never historically addressed

18. What the evidence tells us…
Pre term infants with multiple disabilities
Foetal alcohol syndrome disorder
ADHD
Autism Spectrum Disorder
Increasing numbers of people with complex physical disabilities
Increasing numbers of older people with complex needs and end of life care needs
Changing demographic phenomenon
Therefore increases at both ends of the lifespan 18

19. Common health needs Gastrointestinal disorders Respiratory disease
Cardiovascular disease
Epilepsy
Cancers
Haematological disorders
Ophthalmic disorders
Musculoskeletal disorders
Accidents and trauma
Additional care needs due to: -
Autism Spectrum Disorder
Communication disorders
Challenging behaviours
Mental illness

20. For example…. The UK Nursing Workforce
The UK registered nursing workforce, as with many others in the developed world, is ageing.
In in 10 was aged less than 30 years.
One in three was aged 50 or older.
Over 200,000 nurses on the register were aged 50 or older in (Buchan, 2009)
Some learning disability nurses can retire at 55 creating a workforce gap
Reflected in the workforce as a whole?

21. Workforce Planning in a Context of an Increasing Need for Services
At the recent RCN Learning Disability Nursing summit
Professor Carpenter, National Director for Special
Educational Needs, stated that there are now 950,000 children with learning disabilities in the UK, a 25% increase in the past 5 years.
The number of children with profound and multiple learning disabilities has increased by 29 % over the same period.
Children of today – adults of tomorrow….
The UK is facing an unprecedented rise in the number of children born with learning
disabilities, according to a prominent government expert. Professor Barry Carpenter told an RCN summit of leading learning disability nurses that the increase is mainly due to the growth in the number of children born with fetal alcohol syndrome disorder(FASD), and better survival rates among premature babies. 21 21

22. What has this got to do with people with learning disabilities?

23. Equality, inclusion and outcomes & the sweety shop
Look and not touch?
Equal access to health & social care will present challenges for the future
Access & support has to lead to equal outcomes & wider inclusion
Enabling access to services has to lead to person-centred care & outcomes

24. Changes in demand for support
Increases in lone parent families
Increasing rates of maternal employment
Increases in % of older people with Learning Disability where parents have died or are frail
Changing expectations among families regarding the person’s right to an independent life

25. The situation currently
Co-morbidity will increase, with greater prevalence of gastrointestinal disorders, pneumonia, sensory impairments, epilepsy, dental disease and osteoporosis in the LD population – the list goes on
Increasing demands on mainstream healthcare systems that are struggling to effectively meet needs now and will do so in the future
Increasing demands on specialist health and social care systems now and in the future
? Policy mismatch - increasing demand V decreasing funds

26. Addressing the challenges of the future today
The Numbers of People with LD is increasing and will continue to increase
The level of healthcare needs experienced by people with LD is increasing and becoming more and more complex
Workforce demographics
Knowledge, skills and experience of the workforce
Models of care to meet changing needs
Funding mismatch
Learning from previous experiences of joint working
There’s been a 25% increase in the numbers of children with LD in the past 5 years (Parrish, 2010)
There’s been a 29% increase in the numbers of children with PMLD (Parrish, 2010)
People with LD are ageing and presenting with complex ageing healthcare conditions requiring specialist nursing interventions such as Dementia and Alzheimers Disease.
People with LD have a higher risks of coronary disease and treble the risk of dying from respiratory illnesses (Elliot et al. 2003). 26

27. The Need for Learning Disability Practitioners in the Future
There is a clear need for specialist learning disability practitioners in the future
HOWEVER…
The role and function will be one of knowledgeable and expert practitioner who can educate, assess, plan, coordinate, safeguard and deliver evidence-based interventions for a population with high and complex care needs

28. The future direction?

29. Scanning the horizon to identify need and plan for the future

30. Where we want to get to …

31. Any questions?

32. Developing the workforce in Learning Disability services
Tommy Stevenson
Educational Project Manager
NES

33. Project objectives
Scottish Government funding through Equally Well monies looking at health inequality and implications for workforce:
Analyse data on the educational needs of current workforce linked to models of care
Work with partners to identify existing educational provision and identify gaps short, medium and long term
Produce a report for consideration by partners on the future direction of learning disability health services and workforce needs
Commission appropriate educational resources

34. Strategic drivers Same as You Promoting Health Supporting Inclusion
Health Needs Analysis Scotland
Better Health Better care
Equally Well
Health for all Children
Inequalities in Health
Ready, Willing and Able
Self Directed Care and Personalisation
Autism Strategy ?

35. Principal care groups Transitions (child to adult, adult to older)
Children, young people and adults who challenge services
People with long term and complex health conditions e.g. ASD, dementia, syndrome specific
Multiple care needs
General health care
Older people services

36. Initial activity Project Management Group Steering Group
Development of task and finish groups:
Transitions
Primary/acute care
Specialist services
Third sector
Education providers

37. Current picture Complex and ongoing work streams:
JiT- Commissioning and integration in practice with strategic planning
QIS-A broad range of work streams (Tackling Indifference)
SAY national group- Reviewing and discussing all aspects of learning disability services including health
Learning disability and Co-Morbidity- Reviewing complex needs and mental health
MCN- models of care, partnership, integration and commissioning
A risk of duplication and being disconnected

38. Educational Solutions for Workforce Development- Factors for success?
Clarity of problem/issue that needs solving and clarity that the solution is educational
Workforce solutions are part of a bigger picture
Clearly linked to policy and service development agenda
Engagement and buy in
Impetus for implementation – targets and commitments (noting unintended consequences)
Realism. achievability, and sustainability
Scope, focus and reach
Synergy with other initiatives

39. Consulting with workforce
Initial Task & Finish Groups
Targeted Focus Task & Finish
Targeted Response
Transition
Acute/Primary Care
Acute/Primary Care
Mental Health and
Learning Disability
Complex Needs
Transition:
Child to Adult
Managing knowledge requirements
Complex Needs
Complex Needs
Education providers
Third Sector
The focus in consultation was to develop achievable and sustainable solutions to priority workforce concerns for people with a learning disability
Third Sector

40. INTER-CONNECTING ACTIVITY Managed Knowledge Network
People with complexity in care present with highest risk across the age range
Enhancing all areas of workforce on positive health supports statutory, voluntary and independent sectors
A need for a skilled workforce across all agencies in managing complexity
Essentials for Complex Need
Generic health services focusing on acceptability, accessibility, responsiveness and developing initiatives which reduce risk and vulnerability
Access to information which is up to date, informative and signposts to similar activity, skills development opportunities and knowledge enhancement
Managed Knowledge Network
Specialist services which support and enhance practice sustaining people in their own communities
Joined up strategic intent
Person centred care and support as the driver for service delivery
Developing initiatives which can bridge a broad range of priorities are more flexible, sustainable and, importantly, adaptable

41. General Health Care
Develop a workforce with shared understanding of the ‘vulnerable patient’ across primary and acute care
Support the workforce in identifying ‘champions’ in primary and acute care
Develop peer support worker model (Service users & Employment opportunities)

42. Third Sector Look at current educational needs of social care staff
Current education programmes are they regulated and quality assured
Gaps in workers’ knowledge and skills in meeting complex needs

43. Children and Young People
Leadership
Partnership
Managed care
Collaboration of partners
Mapping into existing programmes
System to share best practice, map into existing initiatives and develop a single point of access.

44. Complex Needs
Meeting the needs of people with profound and multiple disabilities
Building capacity and capability in evidence based/informed interventions to work with people with challenging behaviours
Developing workforce capacity and capability to understand and respond to meeting mental health needs
Support to increase workforce capacity and capability to deliver evidence based psychological therapies through training, clinical supervision and infrastructure support
Develop a ‘new to’ or ‘essential pack’ on working with people with complex needs (encompassing values, attitudes, person centred focus)
Develop a managed knowledge network

45. Agenda to date National conference Strategic position
Visible leadership
Workforce challenges
Discussion:
Integration across services
Complex needs and multiple disability
Shared education, examples in practice
Complex need and a changing workforce
Models of care/support

46. Investing Developing/commissioning educational resources/programme:
Complex needs – The Essentials
Managed Knowledge Network ( learning disability)
Positive Behavioural Support Model - learning Disability Nursing/Allied
Health Professions
(Developing Capability/Competence)

47. Managing information
Most organisations know lots of things but they don’t always know what they know
Managed Knowledge Networks represent a dynamic approach to bridging the gap between “knowing and doing”, enabling people to link learning and practice. They operate by actively engaging people in building communities and managing knowledge resources in specific areas of practice
An electronic portal to support using information to improve care accessed by all partners
Information flows across boundaries

48. Lessons from the south!!
Evidence in relation to current workforce concerns highlight we are not:
Building around service needs and skills required to deliver them
Well integrated with service financial planning (Critical)
Holistic in its approach
Responsive to service changes and development
Supportive of multi-agency training and education

49. Lessons from the south!! Fragmentation of planning
Lack of leadership and management ownership
Training and education weak across agencies
Career structures poorly informed

50. Thinking workforce
Service user
The ideal in workforce development

51. Maximising workforce capability
Developing a shared strategic agenda
Sophistication in workforce information management
Detailed and informed commissioning
Being clear about knowledge investment and linking to models of care
Developing a financial plan which prioritises learning and compliments a partnership with colleges, HEI’s and other institutions/organisations

52. Leading workforce in difficult times
No tweaking around the edges
Transformation in workforce is required
A focus on quality, safety and value for money
A focus on innovation and change
Look at the long term challenges and opportunities
Retain the skilled and talented through the lean years
Designing a workforce for the future

53. Origins Intentions Outcomes
Service Transitions / P.M.L.D. / Complex Needs
Intentions
Local / Regional Perspectives
Generate Key Issues / Challenges
Generate ‘potential’ responses
Outcomes
Inform work of JIT and related work-streams
Produce brief Regional and National Reports
Promote Local / Regional ‘networking’