Welcome to the webinar: Making rehabilitation work better for people 1 st December 2014 #rehabilitation
Chair of webinar: Jane Nicklin Senior Associate NHS Clinical Soft Intelligence Service Presenters: Penny Roberts Jon Barrick Lindsey Hughes Service user member Chief Executive Rehabilitation Programme NHS England Improving The Stroke Association Lead Rehabilitation Services NHS England Delivery Board
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
Making rehabilitation work better for people Jon Barrick CEO Stroke Association Webinar Monday 1 st December Stroke Helpline 0303 3033 100 stroke.org.uk
Stroke: Key facts • 2 nd 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 Can’t reduce costs or fix operations then employed) to meet income 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 kate.pieroudis@stroke.org.uk 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
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