inclusion health and lived experience, pop up uni, 3pm, 3 september 2015
TRANSCRIPT
‘Inclusion Health & Lived
Experience. What’s it all about?’ Presenters:
• Greater Manchester NHS Values Group
• Pathway
• The Equality & Diversity Inclusion Health and Lived
Experience Sub-group
Greater Manchester
Health & Social Care Devolution Delivering sustainable growth, ensuring all GM residents are able to contribute to benefit from that growth
• Creating the conditions for growth
• Increasing total productivity
• Encouraging our residents to become independent and self-reliant
It will (also) enable the prioritisation of early help and support to ensure people are able to take more control over their health and prevent existing illnesses from getting worse
Scale of challenge
• Big structural and financial deficit
• Life expectancy in most boroughs below national average
• 7 out of 10 areas have significantly higher health inequalities in life expectancy
Defining Inclusion Health • “Inclusion Health has been used to define a number of groups of people who are not usually well
provided for by healthcare services, and have poorer health outcomes. Traditional definitions
cover people who are homeless and rough sleepers, vulnerable migrants (refugees and asylum
seekers), sex workers, and those from the Traveller community (including Gypsies and Roma).
• NHS England’s working definition also includes those undergoing or surviving Female Genital
Mutilation (FGM) and Human Trafficking, and those who define themselves as being part of the
recovery movement, both through substance misuse and mental health issues..
• A proposal was also made by the E&HIPB to include the trans/non-binary community within scope
of consideration as there is only an interim protocol for gender identity services in place and the
service specification is currently being finalised
• NHS England’s definition of those in scope is kept under constant and regular review.”
Our ‘lived experience’ is a result of how
we are treated
Who is GMNHS Values Group?
• A product of NHS England’s Values Summits the group comprises of very committed individuals working to transform health and care –people with lived experience, patients and carers, frontline staff and managers, local community and voluntary sector organisations, CCGs, GPs, NHS providers.
• Since 2013 GMVG have been working with the NHS and its partners in Greater Manchester and the NHS England’s Equality and Health Inequalities Unit exploring innovative approaches to tackle inequalities in access and health outcomes for the most vulnerable and thereby improve health and care services across Greater Manchester.
Find some of us here today
Pathway: Transforming health services for
homeless people
• Pathway has developed a simple and successful model of enhanced care
co-ordination for homeless people admitted to hospital
• A model of integrated healthcare for single homeless people and rough
sleepers, it puts the patient at the centre of their own care
• Homeless people in the UK don’t die from exposure. They die from treatable
medical conditions. Dr Nigel Hewett, Medical Director Pathway
EDC Inclusion Health & Lived Experience
Sub-group: Purpose: To tackle health
inequalities and advance equality for all.
• The Health Inclusion Subgroup will focus on equality and health inequalities issues
from a value groups and endeavours to focus on working alongside people with lived
experience. Its purpose is to assist the shaping of the future of the NHS from a safety,
equality, health inequalities and human rights perspective and to improve the access,
experiences, health outcomes and quality of care for all who use and deliver health
and care services. This will be carried out by working with people with lived experience
to advance equity in access to improve health care experiences and outcomes for the
most disadvantaged groups and those with protected characteristics by 2017.
• What do we stand for ? Ensuring those groups with the
starkest health inequalities receive early access to good
quality accessible services which begin to narrow the
health inequalities gaps.
• What works ? Ensuring those at the margins of society
and experiencing multiple disadvantage get a fair deal
from the NHS .
• What Matters ? Compassion , Care and Co-production
The Word on The Streets of
Greater Manchester …and
many others too
• ‘No mountains to climb, no rivers to cross, just fairness ,health dignity ,and understanding for all. No matter where you live or what country you arrived from, like minded people caring - equality for all.’ WE CARE DO YOU? - Dave
• ‘It happens to us : Invisibility , marginalisation , denial of access to care . People with Lived Experience of social exclusion in healthcare - Nothing about us without us!’ – Elham
• ‘You can't design services for groups of people whose lives , needs , assets and health issues are an 'unknown’ – Carl
• ‘A and E left me for 14 hours ‘fitting’ with no access to
methadone’ – person in recovery
• ‘I have no one looking after me as a person, only as 5 different
diseases’ – Elderly Dementia Group user
• ‘I went through hell telling them. Don’t they know I cannot say it
again?’ Young person using Mental Health Services
• ‘Pseudo engagement comes in many forms and is
demoralising for experts by experience’ – Bernard
• ‘Why is it the lived experience names that seem to get left
off the conference booklets or presentations when they co
present with professionals ?!’ ( unconscious bias ?!)
- Nicola
• ‘Experts by experience on top. Not on tap for retro fitted
consultations!’ – Mariyam
• ‘Professionals need to overcome the feeling that they can't
have open dialogue when people of lived experience and
service users are involved’ – Lynn
• ‘you can't speak in your own language and assume it's
universal - whether that be the language of professionals,
the language of acronyms ,or the English language...’
- Kevin
• ‘As we are in one TEAM - and team stands for:
• Together
Everything
Achieve
More
- Iman
• ‘No access to dedicated nursing who can help me…
• I can get out of safe houses and get drugs anytime’ -
Patients in recovery
• ‘Professionals and experts by experience working together
- a powerful partnership to get care and services right’ -
Mas
Discussion: • How good practice of involvement can create a fairer and
more effective health service for marginalised groups.
• How co-design can work from simple engagement
through to setting and monitoring standards of healthcare
for service providers and commissioners
Discussion: • How good practice of involvement can create a fairer and
more effective health service for marginalised groups
• How co-design can work from simple engagement
through to setting and monitoring standards of healthcare
for service providers and commissioners
What we found out – examples of our work
• JSNA’s do not fully describe the communities it intends to serve - People with the greatest health inequalities rarely featured
• JSNA’s are not written with the public in mind – measures needed to engage
and capture qualitative evidence
• The evidence of those people with greatest need did not make it into the
strategies for action
• What practical steps can be taken to have an inclusive evidence
based JSNA and how can we ensure the evidence is included
commissioning action by H&WB?
The story remains the same - what’s on
paper doesn’t always make a difference
to those most at risk of inequality…here
are some facts and figures. They remain
constant …
Asylum Seekers & Refugees
• Two-thirds of refugees & asylum seekers suffer from
anxiety or depression (Inclusion Health Board 2009)
• Mental health problems such as depression and anxiety are common, but post-traumatic stress disorder is greatly underestimated and underdiagnosed and may be contested by healthcare professionals (Faculty of Public Health 2008)
• Homeless people are over 9 x more likely to commit suicide than general population
• 42% have attempted suicide
• The average age of death of a rough sleepers is 30 years earlier than average population
• Source (The Salvation Army 2008, Crisis, 2012)
Gypsy & Traveller Communities • Have lowest life expectancy of any ethnic group in UK
• Continue to experience high infant mortality rates (18% of
G&T) women have experienced the death of a child
• High maternal mortality rates; low child immunization
levels
• High rates of mental illness, suicides, substance misuse,
diabetes, heart disease and premature death (Source DH Ministerial working group 2012)
• 85% of street sex workers report using heroin and 87% using crack cocaine
• People with learning disabilities are 58 times more likely to die
prematurely than the general population
• Hepatitis B and C infection amongst female prisoners are 40 and 28 times higher than in the general population
DH & PH statistics 2010
On being ‘Agents of Change’ “ We are experts by experience – speaking truth to power …even when we are not listened to…
…we will continue to deliver hard hitting messages until you are ready to hear the reality of people’s experiences
and truly reduce health inequalities and put into practice the values of the NHS Constitution .’’
- Stewart Moors, Co-Chair GMNHS Values Group
Contact details: • Greater Manchester NHS Values Group
• Pathway
• EDC Inclusion Health and Lived Experience Sub-group