London Strategy for Life after Stroke Tony Rudd

Story so far 2 HASUs Provide immediate response Specialist assessment on arrival CT and thrombolysis (if appropriate) within 30 minutes High dependency care and stabilisation Length of stay less than 72 hours Stroke Units High quality inpatient rehabilitation in local hospital Multi-therapy rehabilitation On-going medical supervision On-site TIA assessment services Length of stay variable 30 min LAS journey* After 72 hours Discharge from acute phase Community Rehabilitation Services HASUSU 999 New acute model of care

1 year outcomes % of patients spending 90% of their time on a dedicated SU

1 year outcomes Average length of stay

1 year outcomes 3.5% 10% 12% Feb-July 2009AimFeb-July 2010 Thrombolysis rates 14% Jan-March 2011

Improvements in Community Services  Many more areas now have early supported discharge teams  Some increase in longer term stroke rehabilitation teams  We are reviewing in-patient rehabilitation services

London Stroke Survival vs Rest of England Hazard ratio for survival in London %CI p<0.001

The Stroke Association UK Stroke Survivor Needs Survey Christopher McKevitt Reader in Social Science & Health King’s College London

Aims 1.To estimate levels of self reported long term need in stroke survivors (1-5 years) 2.To compare levels of need between stroke survivors in England, Scotland, Wales & Northern Ireland

Results 51% reported having no unmet needs Of those reporting unmet needs, total number per respondent ranged from 1-13, median 3

Information 54%: more information about stroke No differences by age, gender, ethnicity, disability level or time since stroke Significantly different by nation (p=0.009): Northern Ireland=66% Wales=65% England=54% Scotland=49%

Unmet health needs N reporting problem (weighted %) Need unmet (%) Need met to some extent (%) Mobility321 (58.4)2543 Falls265 (43.9)2147 Incontinence217 (37.2)2140 Pain249 (39.5)1551 Emotional244 (38.4)3934 Speech194 (34.3)2833 Sight212 (37.2)2639

Other unmet needs N reporting problem (weighted %) Need unmet (%) Need met to some extent (%) Fatigue301 (51.7)4336 Concentration260 (44.7)4341 Memory260 (42.8)5925 Reading148 (23.2)3443

Changes in social participation 52% unable to return to work or reduced hours Significantly higher in Black and other ethnic groups compared to Whites (p=0.006, population registers) 67% reported loss in leisure activities Significantly higher in Black and other ethnic groups compared to Whites (p=0.012, population registers)

Impact on finances 18% of those working at time of stroke reported a loss of income since stroke 31% reported increased expenses 16% (25% population registers) reported need for benefits advice

Family 42% reported a negative change in relationship with partner 26% reported negative changes in family relationships

Groups at higher risk? No differences by age gender time since stroke Higher unmet need: disability, including communication disability ethnic minority stroke survivors people living in poorest areas

Stroke survivors in London ‘ denied recovery ’ says new report calling for better coordination and support ‘Stroke survivors across London say they are being denied the chance to make their best recovery because of a lack of patchy post hospital care and confusion between health and social care services, states a new national report published today (Tuesday May 1 st 2012) by the Stroke Association.’

85% of stroke survivors say that the impact of stroke is not understood Six out of ten (59%) said that health and social care services did not work well together resulting in families and carers having to take responsibility for coordinating care. Almost a third (31%) reported services being reduced or withdrawn even though their needs had stayed the same or had increased. Stroke Association Survey Findings

 38% felt they did not receive enough support from NHS services  Almost a third (31%) reported services being reduced or withdrawn even though their needs had stayed the same or had increased.  77% are unable to get out as much since they had their stroke.

Life After Stroke Commissioning Guide

London stroke strategy – where this fits London stroke strategy (2008) Public consultation (2008/09) Rehab commissioning guide (2009) Life after stroke (2010)

Principles  Active citizenship  Quality of life  Empowerment

Scale of need Prevalence ranges from 1.6% to 0.8% of registered GP population 88,000 people across London on GP registers have had a stroke or TIA Sum of stroke and TIA patients in a GP register in 2008/9

Diverse needs  15% have on-going continence problems  25% of nursing home residents have had a stroke  33% of stroke survivors report depressive symptoms  20% “silent stroke” – underlying cognitive problems

Regular review  Needs change over time  Recognise variability of needs and aspirations  National guidance – 12 monthly review Stroke survivor Social care GP Therapist Stroke navigator Structured social group

Information  Stroke care navigator  Single point of contact  Direct role in delivering care  Coordinate care packages  Training stroke survivors and carers  Work across different sectors  London stroke directory

Engaging with community life  Stroke survivors do not get out of the home as much as they would like  Building confidence  Addressing practical issues  Community/social groups have benefits beyond primary purpose

Peer support & peer-led services Peer support Improve emotional wellbeing Build capacity Sense of purpose Range of functions Confidence Source of information Improve functional status

Carers and families  Carers have a right to their own needs review  Training and education should be provided  Local authority and charitable sector support is available

Conclusions  Stroke care is better in London as a result of the stroke reorganisation  BUT  Still failing to meet longer terms needs of people after stroke  There is no additional money for changing these services  Need to persuade commissioners that these are services that are worth investing in for both clinical and economic reasons  Major concerns that government cuts will negatively affect the resources available to people for longer term support