Moving forward with personal health

budgets Dr Alison Austin & Colin Royle

@A_Austin4 @colinroyle

Contents • What are personal health budgets?

• What do they mean for people?

• Evidence & policy context

• Coproduction

• Support for CCGs

The challenges • Increasing numbers of people living with more

than one LTC – increasing demand on services

• Safety: Francis, Berwick & Winterbourne

• Facing a decade without an increase in

spending: unprecedented in NHS history, set

against rising demand (4% pressure pa)Safety

– Francis, Berwick & Winterbourne

Personal health budget are part of the solution, they:

• Radically changes the relationship between the health professional and patient to a much more equal one.

• Centre around a care plan and focus on outcomes

• Delivers integration at individual level and higher quality care.

• Works well for people with the highest support needs.

• Enables a wider range of possible solutions than traditionally commissioned services. Not new money

• Promotes self-management and reduces reliance on NHS services.

Malcolm’s story

Colin Royle

About Malcolm • Celebrated 70th birthday in January 2015

• Married for over 43 years

• Father to two children

• Spent most of his career in sales

• Retired in 2005 to spend more time with Anne

(Malcolm’s wife/my mother)

Early symptoms • Withdrawal from activities

• Became more self-involved

• Some memory loss

• Confused and disinhibited

Complex needs • Became doubly incontinent

• At high risk of choking (dysphagia)

• No longer able to understand what was being said

• Unpredictable behaviours and aggression

Diagnosis • Started becoming ill immediately after retiring

• Was sectioned (3) in February 2008

• Diagnosed with right frontal lobe dementia in June 2008.

• Only one in every one million people suffer with this form of

dementia

Care package • Discharged from hospital in 2008 under section 117 of Mental Health Act

• Fully funded through health

• I became Malcolm’s full time carer

• Initially attended day centre: Mon – Thurs. 8am – 5pm

• Started receiving personal health budget in 2009

What helps dementia sufferers? • Consistency

• Routine

• Familiarity

• Living at home

• Clear and simple language

• Appropriate levels of medication

How was PHB used? • Employed five members of staff to care for Malcolm

• We chose rates of pay for carers

• Gave choice over attending which daycentre suits him

• More flexibility in hours of support

• Used for all of Malcolm’s life needs, including health

• Purchased sky + box, rented a flat, bought a fence amongst others

Real risk – Money well spent? Daycentre - £28,500

• Didn’t understand his needs

• Generic activities

• Lack of choice

• Lots of anxiety

• Highly medicated

Sky + box - £35

• Provides choice

• Stimulates him

• Keeps him calm

• Keeps him engaged

• Keeps him safe

And finally… • Malcolm passed away in April this year

• Had consistency in his care until the end

• Staff understood his needs and communicated effectively

• Staff still visit the family regularly

• Had more choice in activities

• Spent all of his life living at home with his family, some six and

a half years after being discharged from hospital

The independent evaluation of personal health budgets has shown that they can lead to improved quality of life whilst meeting health needs and being cost

effective (even saving money for some).

POET survey: 302 PHB holders and 247 carers took part in 2015 POET survey

• Over 85% of PHB holders and 75% of carers said their views were included in developing their support plan

• Over 80% of PHB holders and 75% of carers said the budget had a positive impact on quality of life, independence and arranging support

• Best results when views included and the process of getting a budget was easy

But ….

Around 15% said

aspects of

getting a PHB was

difficult

Five Year Forward View • sets out how the health service needs to change,

arguing for a new relationship with patients and

communities.

• makes a specific commitment to do more to support people with long term conditions to manage their own

health and care.

• sets the expectation that people will be given more

choice and control, including personal budgets and Integrated Personal Commissioning (IPC).

Personal health budgets are part of mainstream

NHS •Continuing Health Care: from April 2014 people receiving NHS Continuing Healthcare have had the right to ask for a personal health budget, this was strengthened to a “right to have” in October 2014.

•Children and Families 2014: children who have special educational needs should have a single assessment, an Educational, Health and Care Plan and the option of a personal budget. •The NHS Mandate: from April 2015 people with long term conditions who could benefit should have the option of a personal health budget. •The 2015/16 Planning Guidance: “CCGs to lead a major expansion in 2015/16…… CCGs should engage widely ….. include clear goals on expanding personal health budgets within their published local Joint Health and Wellbeing Strategy.”

Forward View into action: Planning for 2015/16 “ CCGs should engage widely and fully with their local communities and patients, including with their local Healthwatch, and include clear goals on expanding personal health budgets within their published local Joint Health and Wellbeing Strategy.”

• CCGs have the flexibility to set out their own plans, informed by local demographic, current understanding of groups who may benefit and by knowledge of where they may have the most benefit locally.

• All offers should include: – those eligible for adults NHS Continuing Healthcare & children’s continuing care – children with special educational needs and disabilities – Adults and children with learning disabilities

• Numbers will vary depending on local demographics

Who could benefit? Benefit is linked to the level of need rather than on a particular diagnosis or having a particular condition. This could equate to around 1 - 2 in 1,000 people (0.1 - 0.2% of the population).

Groups who may benefit include:

– people receiving NHS Continuing Healthcare

– people who do not qualify for NHS CHC, but who have health needs which would be suitable;

– children with education, health and care plans, who could benefit from a joint budget including money from the NHS;

– people with learning disabilities and high support needs

– people who make ongoing use of mental health services;

– people for whom current services don’t work, so end up accessing acute services more; and

– people who need high cost, longer term rehabilitation e.g. people with an acquired brain injury, spinal injury or mental health recovery

Importance of involving people with lived

experience

Colin Royle, Co-founder of peoplehub

The importance of working together • Bringing policy and practice together. This ‘early testing’ is incredibly

efficient.

• Spotting pitfalls - “that just wouldn’t work!”

• Offered thoughtful challenge to policy and papers.

• Sense-checking – people with lived experience will sometimes ‘hear’

things in a different way

• Developing trust

Our model

National PHB peer network The peer network has:

• Constructively commented on and helped to shape emerging policy and contributed to emerging policy and practice including the direct payments regulations and guidance.

• Contributed to all the good practice guides.

• Identified important workforce and training issues.

• Shared their experiences at national events.

• Developed key messages on personal health budgets.

All CCGs should be developing their local PHB

offer Local offers should set out:

• Who can get a personal health budget locally?

• Which organisations are involved ?

• How can professionals and the public can find out more information?

• How can someone apply for a personal health budget?

Local offers should be:

• Developed together with people with direct experience and providers

• Agreed by the health and wellbeing board and published

• Linked into the commissioning and contracting cycle

• Backed up by an implementation plan

Support

for CCGs

Developing the local

offer programme

Running across country starting: London 23 Sept

Birmingham 1 October

Leeds 13 October Newcastle 3 November

Manchester 10 November

Bristol TBC

Book at events.england.nhs.uk

Where to get more information Personal Health Budget NHS Learning Network www.personalhealthbudgets.england.nhs.uk or www.england.nhs.uk/healthbudgets

peoplehub www.peoplehub.org.uk

POET - www.thinklocalactpersonal.org.uk Integrated Personal Commissioning http://www.england.nhs.uk/wp-content/uploads/2014/09/ipc-prospectus-updated.pdf

Any Questions about PHBs, the support offer or POET contact: england.personalhealthbudgets@nhs.net