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1st December 2014
#rehabilitation
Welcome to the webinar:
Making rehabilitation work better for people
Chair of webinar:
Presenters:
Jane Nicklin Senior Associate NHS Clinical Soft Intelligence Service
Penny Roberts Service user member NHS England Improving Rehabilitation Services Delivery Board
Jon Barrick Chief Executive The Stroke Association
Lindsey Hughes Rehabilitation Programme Lead NHS England
Welcome
Jane Nicklin Senior Associate NHS Clinical Soft Intelligence Service
Penny Roberts Service User Member NHS England Improving Rehabilitation Services Delivery Board
Making Rehabilitation Work Better for People
Penny Roberts – Service user member of the NHS England Improving
Rehabilitation Services Delivery Board
Rehabilitation is everyone’s business
• It starts with the messages given to people at the very beginning, after accident, illness or injury.
People see me and assume I have no function other than to be 'cared for'
• We need to change that expectation
• Education and change of attitude is the key
Rehabilitation should empower patients to 'get back to living life'
• We need to change that expectation rather than imposing a standardised care system that people can't escape
Rehabilitation needs to be seen in a more flexible way
• …not just a period one goes through, in-between being 'ill' and 'totally cured'
An integrated budget made the biggest difference to me
• Assistants, supporting me to get on with my life, made the difference between being the real me and ‘an existence’
We need to measure and value the difference made by quality of life
• Previously, I was visited by up to 15 different people in a day (carers, district nurses etc.)
• I had: – many health problems
– poor quality care
– frequent hospital admissions
– pressure sores
– pain
– and an expectation that this would never improve
Which is best value? • I am now well... I don't take
any drugs, I don't have any of the complications expected for a spinal injured patient of 20 years
• I haven't had a hospital admission for 16 years, I rarely see my GP, I have no pain and I'm fit and active
• I also contribute to society and I'm an employer and educator of others
Jon Barrick Chief Executive The Stroke Association
Stroke Helpline 0303 3033 100
stroke.org.uk
Making rehabilitation
work better for people
Jon Barrick CEO
Stroke Association Webinar Monday 1st December
Stroke Helpline 0303 3033 100
stroke.org.uk
Stroke: Key facts • 2nd biggest killer in the world, Number one cause
of severe disability in the world and in UK
• Due to medical advances more people now
surviving stroke so number of survivors in
population rising, currently around 1.2 million in UK
• Can happen to anyone, anytime, any age, around
500 children a year have a stroke
Stroke Helpline 0303 3033 100
stroke.org.uk
Stroke Association Facts • Help 66,000 stroke survivors and their families in direct
services each year funded by NHS and local authority
• Have a national helpline and have 6000+ trained volunteers
• Operate in all 4 countries of UK
• 395 services on ground, and additional 450 stroke clubs and
groups
• Main funder of Stroke Research for the last 22 years, in active
contact with 6000 stroke medical and care professionals
• 800 paid staff working out of 193 locations
• Shortlisted 4 times in last 9 years as Britain's Best Charity
Stroke Helpline 0303 3033 100
stroke.org.uk
Stroke Survivors views
•Most recipients of rehabilitation biggest
complaint is that the “dosage” is rationed
•That the NHS in being “evidence” driven
doesn’t use the evidence of users views, or
recognise adequately that research itself
does not exist to specify good practice so
many questions are unanswered.
•That the “system” constrains patient centric
care
Stroke Helpline 0303 3033 100
stroke.org.uk
Done with, not done to
• Why rehabilitation, people need to understand , and
consequences
• Linking in to support mechanisms beyond the medical
• The NHS is not the health system, it is a very important
component, but there are other resources..
• Most limited resources are time and expertise, the therapist
has expertise, the client has time, how can the challenge of
this be met
• NHS is dominated by risk aversion and problematic change
management, culture clash with those determined to give
patient choice
Stroke Helpline 0303 3033 100
stroke.org.uk
Dosage rationing and closed system.
Income and Costs Fixed Income too low Costs too high
Fix income, (bring in more) or close Fix the operations by achieving productivity improvement (costs held but work faster, longer, or smarter to pack in more)
Reduce operation (dosage or numbers employed) to meet income
Can’t reduce costs or fix operations then find someone else to do it, part of it or close
Room for re managing is very small
Stroke Helpline 0303 3033 100
stroke.org.uk
Dosage limited, consequences are
• NHS System works within budget
• Concept of a patient journey to a goal they determine along
a care pathway has to be a secondary consideration
• Concept of researching positive change further along 2, 5 ,
10 years not done very often. Result is concept of
structured services around patients based on optimising
individuals over years doesn’t occur
• NHS patients not receiving rehabilitation that could reduce
societal costs and possibility of reduced years of life with
quality of life reductions
Stroke Helpline 0303 3033 100
stroke.org.uk
Expanding the view, options
• State gives more money to NHS rehabilitation
• Look for Productivity improvements particularly using new
technologies that the patient can use at home or with family
• Less individual, more group work
• New systems of working involving more resource being
brought in. Broadening concept of good practice
• Examples from the Stroke Association
• Communication Support and Communication +
• Stroke Association Child Stroke project with Evelina
• London Back to Work Service
Stroke Helpline 0303 3033 100
stroke.org.uk
Children and stroke • Operating out of the Evelina Hospital and within
the Community
• Child stroke support co-ordinator
• Conduit to help parents/child understand the
therapies and work out what is appropriate
• Previous potentially long waits for therapy is
resolved
• Integration across geographies and system
• Better independence, outcomes and benefits for
child and family over a lifetime.
Stroke Helpline 0303 3033 100
stroke.org.uk
Return to work • Almost a third (31%) of strokes occur in people under 65
• For many returning to work is important, not just for financial
reasons but to rebuild confidence and regain independence.
• Return to existing work can be possible but also new
opportunities including volunteering
• Unfortunately only a small number are successful in returning to
work.
• Impairments caused by stroke can act as a barrier to some roles,
these may not become clear until survivor has returned to work –
can result in crisis points
• Lack of stroke awareness from employers, failure to focus on
what survivors can do and a lack of practical support to help
build survivors confidence and skills are also significant.
• Currently vocational rehabilitation services are patchy
Stroke Helpline 0303 3033 100
stroke.org.uk
Back to work Project • 3 year Back to Work project in London provides support and
guidance for stroke survivors to return to existing work after
stroke or to access new opportunities
• Caseload of around 25 people at various stages of
• Support for survivors through workshops on topics like
mindfulness, confidence building and assertiveness in the
workplace
• Focus on working with survivors and employers to find low cost
practical solutions to some of the barriers they experience
• Works with employers through information, advice and training
on stroke and it’s impacts
• Works best when alongside team of multidisciplinary
professionals
• Contact project manager [email protected]
Stroke Helpline 0303 3033 100
stroke.org.uk
Results • Patients and families understand the therapies
• Person centric time allocation, outcomes and choices
• Receive what is relevant and appropriate
• Motivational and more “round the clock” support
• Individuals and families cope better
• More people drawn into supportive and change driven
activity
• Better independence and disability outcomes
• Benefits over a lifetime
• Therapists as part of a network, fight against arbitrary
bureaucratic boundaries
• Cost effective over long term
Stroke Helpline 0303 3033 100
stroke.org.uk
Reworking Our Service Model
Hospital to community – EIS-Stroke Recovery
Navigator/Co-ordinator
Rehabilitation/Reablement/Support-intensive
rehabilitation/exercise referral
Review Services
Back to Work& Study Skills Service
Communication support service- Aphasia, Dysphasia etc.
Emotional needs support-Anxiety, depression, etc.
Supported self management and confidence
building-SASHA
Secondary prevention
Carer- Assessment and support
Advocacy
Specialist Childhood Stroke Service
Specialist
Advice & Information
One to one support
Online community
Telephone Helpline
Voluntary Groups and Clubs:
Peer support, Sign-posting, Carer
network and support, Befriending,
Rehabilitation and Exercise
programmes, emotional support
Grants
My Stroke Guide (SASHA)
Added Value Sustaining Independence
Building Social Capital
Contracted Services Reablement, Support and Rehabilitation
Person
Centred
Stroke Helpline 0303 3033 100
stroke.org.uk
Self management
For more information
Helpline: 0303 3033 100
Website: stroke.org.uk
Lindsey Hughes Rehabilitation Programme Lead NHS England
www.england.nhs.uk
Rehabilitation
is everyone’s
business
Lindsey Hughes
Rehabilitation Programme Lead
1st December 2014
www.england.nhs.uk
• 2012 CAHPO asked by Sir Bruce Keogh to establish if there was a case of need to improve adult rehabilitation services
• examples of good innovative practice and service design but poor adoption and dissemination
• clinicians and service users - unsure of services available and how to access them
• IARS COP
• 2013/14 Rehabilitation Engagement Project
• NHS IQ – Good practice examples
Improving Rehabilitation Programme
www.england.nhs.uk
Rehabilitation Team
Regional
Rehabilitation
Lead - North
Sarah Sewell
Regional
Rehabilitation
Lead - South
Jackie Turnpenney
Regional
Rehabilitation Lead
– Midlands and East
Joanne Fillingham
Regional
Rehabilitation
Lead - London
Karen Robb
Admin Assistant
Peter King
Admin Assistant
Jessica Beach
National Clinical
Director
John Etherington
Deputy CAHPO
Shelagh Morris
Children and
Young People
Scoping Project
Lead
Anne Gordon
Rehabilitation
Programme Lead
Lindsey Hughes
www.england.nhs.uk
• Create and communicate
the strategic vision for
the NHS England
rehabilitation programme
• Drive a whole system
approach to improving
rehabilitation services
• Priorities
Return to work
Long Term conditions
Rehabilitation Delivery Board
• System representation
• Service user
• NHS England
• PHE
• DWP
• ADASS
• CCGs
• AHPF
• BSRM
• RCGP
www.england.nhs.uk
• Regional Rehabilitation Leads
• Children and Young People’s rehabilitation scoping
project
• IRS Community of Practice
• Discussion forum
• Snapshots
• Soft intelligence questions
• Twitter conversations
• National Rehabilitation Conference 31st March 2015
Get involved
www.england.nhs.uk
• Remit of the regional leads
• Needed for the CYP scoping project
• Promotes dialogue
• Proves it can be done!
• Small change big impact – if introduced widely
• Five Year Forward View – “no one size fits all” but
can’t let “a thousand flowers bloom”
• Cross boundary working
Sharing good practice is critical
www.england.nhs.uk
Contacts:
Post Post holder Email address
Rehabilitation Programme
Lead
Lindsey Hughes
Children and Young
People’s Rehabilitation
Scoping Project Lead
Anne Gordon [email protected]
Regional Rehabilitation
Leads
North of England Sarah Sewell
Midlands and East of
England
Joanne
Fillingham
South of England Jackie
Turnpenney
London Karen Robb [email protected]
www.england.nhs.uk
NHS IQ – good practice examples
http://www.nhsiq.nhs.uk/improvement-programmes/acute-
care/recovery,-rehabilitation-and-reablement.aspx
Any Questions?
Joining in the conversation
Community of Practice Forum on NHS Networks
Post your comments and information you want to share on:
http://bit.ly/1nZVn8t
NHS Clinical Soft Intelligence Service Hosted by NHS Warrington CCG
Become a contact on the Community of Practice email Katherine Andrews at [email protected]
with your name, role, organisation, email, telephone contacts and region
1. A named contact for IRS - title your email ‘Named contact for IRS’ – You will receive direct emails -news and information – we will share your contact details with NHS England and other related work
programmes so that they may contact you directly as someone with a local interest in IARS.
2. A general contact for IRS - title your email ‘General contact for IRS’ – You will receive direct emails -news and information – your contact details will not be shared with NHS England or other related work
programmes. For data protection, contact details provided under the heading ‘General contact for IARS’ will be included in a database of contacts used only by the NHSCSI team.
NHS Clinical Soft Intelligence Service Hosted by NHS Warrington CCG
What are you doing? What is your experience?
• Tell the community of practice about your rehabilitation developments:
– ‘Snapshots’ – complete the form http://bit.ly/1ul3Xht
– ‘Soft intelligence’ - respond to our invitations to tell us your views http://bit.ly/1nZVn8t
NHS Clinical Soft Intelligence Service Hosted by NHS Warrington CCG
Upcoming webinars
• 19th January
• 5th February
• 2nd March
