Health beyond healthcare
Thursday 28th January
12:00 – 13:00pm
ALISON CAMERON:
We can now go over to Wandsworth, where the whole community is involved in
partnership with the NHS, taking the NHS out of the hands of the services, into the
community, which is in fact where health is made.
Over to you guys in Wandsworth.
No? Can you hear me?
MALIK GUL:
Thank you very much, Alison.
We are a bit late, I am pleased about that, because I was talking rubbish. (inaudible).
Shall I carry on talking?
Should we switch that down?
Sorry, we are sorting out some technical issues.
Sorry for the delay and the technical problems, I was just saying, Alison, I am
particularly pleased that we started about 10 minutes late, because everything I was
talking about earlier on didn't make sense. We had a chance to take a breather, drink
some water, and come back again.
ALISON CAMERON:
I lied, you were talking such rubbish…
MALIK GUL:
We feel lucky and blessed to have you as an enabler, and a friend, and to share this
journey with you. I know you have been on this for the last 24 hours, I don't know if
you had a sneaky sleep last night, but well done, and thank you for inviting us.
Before I start, maybe we can introduce the people with us around the table. I am
Malik Gul, director of Wandsworth Community Empowerment Network.
SPEAKER:
I am David Bradley, Chief Executive of St George's NHS trust.
SPEAKER:
I am Imam, the chaplain at St George's Hospital.
SPEAKER:
I am Gita, a chaplain at St George's, and also coordinator at the temple in
Wimbledon.
SPEAKER:
I am the co-founder of (inaudible), and initiator of (inaudible), and we will talk about
that later.
SPEAKER:
I am Freddie Brown, (inaudible) in Wandsworth.
MALIK GUL:
Alison, one of the things you will see from around the table and what the table looks
like. To me, it looks like London.
I was just saying earlier on that I want to plug a book, a new book out by Ben Jude, I
was at a talk called Life and Death in London. And what we have discovered about
London is that it is a city of diversity. 40% of London is now not born in the UK.
Multi-culture and multi-diversity is now live in London, but it is pushed to the margins
of London. One of the things that Ben said that struck a chord with me is that London
is a city of prayer. It is a spiritual city that is full of places of worship - churches,
mosques, temples - different communities associated in getting together.
Just being social and communal with each other, and London is also a place of
recreational clubs, hairdressers, chicken shops, restaurants, bingo halls, places
where people gather. And one of the things that has emerged in Wandsworth over
the last 10 years where we have been working, to put a lens on those communities,
these are not just voluntary sector organisations, or not just faith groups, these are
actually complex systems of people who are associating and getting together to care
for themselves.
Of course, one of the challenges we have in our talk today is health beyond
healthcare. One thing we realise is, the healthcare industry cannot deal with
inequalities by itself. Where health is produced is in these pocket and places. To
tackle health in London, we need to coproduce it with all of these different unities.
What is important, and what you see around the table, and the work we have done
over the last 10 years, it is seeking to integrate horizontally, so the different
communities in London are not actually separated, so churches, temples and
mosques, but we are working together to tackle the problems that affect all of us.
But also working vertically, not working outside the system, we are working with our
public institutions, who have a statute or illegal is possibility. How do we bring the
horizontal and vertical together? One thing we have done in Wandsworth is form a
coproduction Reference Group, where we have brought together around the table in
a safe space leaders of our public institutions and leaders of our local communities
to actually talk about some of the challenges that we face collectively, and for that
group to act as a heat shield, to protect the innovation that is going on.
I would like to ask David to say a bit about at work.
DAVID BRADLEY:
Thanks, Malik. What you said is very important about where health takes place. I run
a health trust, and it is often seen as the institution, and there are a lot of people in
the NHS that think this is only where health happens. And it doesn't, health happens
everywhere.
It is only a small percentage of people that get admitted to hospital, and what we
have got to make sure we do is how we reach out and work together to make sure
that health is delivered everywhere, and that our communities are healthy. And we
work so that it stops people having to be in touch with my service.
I have seen the work in here, and the fantastic work in the communities, voluntary
groups like Malik says, and I think my role is to be able to help some of that
happened, and stop… Malik talked about the Cooperation Reference Group. I
recognise my role can be quite powerful for people in my organisation.
I think it is to allow some of this work to flourish, and to give that authority, and say,
"It is OK. We can do this." That is really important. Because it is often seen as,
people don't see it as important, it is a community group, or a voluntary group, and
my role is to try to help to support that, talk it up, say how good it is, how valuable it
is, and it allows some of that to happen.
There is a lot of politics around, particularly around councils, CCGs, about how we
can do health in a different way. If I can provide that heat shield - as Malik says - to
do that, we will start to get innovation flourishing. When you get beyond it, and you
see what happens, some fantastic work happens in Wandsworth and across
Wandsworth, and it is due to the groups happening here. That will bring a greater
benefit than all we can do on our own together.
I like that word that you say, Malik, “heat shield”. That is a key role that I can play in
this.
MALIK GUL:
Once we start collaborating together, and we have the support of not only the
leaders of our public institutions, but also the leaders of our communities, we are
then in a better place to work collaboratively. We then feel much safer. And the
challenge is that we feel isolated and fragmented, different products, let's work with
the Somali community, the Hindu community, when actually you are not generating
enough value to change the system.
The challenge for us is to bring the capabilities together into a whole system where
we are able to really push systems. What is key for us is two things. One thing is
recognising the rich diversity and capabilities of our communities. It is not just the
healthcare industry that is going to solve things, it is the capabilities and the rich
talent and resources in our communities.
And how do we bring the rich talent of our communities into a coproduction
relationship with our local communities?
GITA:
We have been with the WCN for nearly a decade. We are based in Wimbledon. My
parents built the temple, the first consecrated Indian temple in Europe. As a
community, mostly of South Indian and Tamil origin, we always prided ourselves on
the fact that we are very educated. My parents came in the '60s, as qualified people,
into London. They sought to help the community at the time.
We have always prided ourselves that we have a huge number of doctors, lawyers,
engineers, accountants. That is our heart of the community. We always felt we were
able to deal with any issues in-house. We have been happy that we haven't had to
ask for grants or any help during the time of the temple's development or its progress
forward.
When my father died in 1998, we took over the responsibility and we were a
generation, second generation here, born and brought up in the UK. We were
English educated, happy to talk, and we looked at ways to be able to help our
community server, not just provide the religious and spiritual side but also to help
those who were coming over because of the Civil War in Sri Lanka, so, to help them
with medical issues.
We were happy to come along for the WCN meetings and to give our support.
That all changed in 2009, when the civil war in Sri Lanka reached its horrific climax.
The UN said there were at least 40,000 civilians killed in the last few months of the
war. From the outside, there was a press embargo and now independent inspectors
in the country. That meant that the public front said there was nothing happening.
This contrasted with what our communities were hearing from friends and family, and
also people who were there as witnesses.
At that point, we found that the temple was an abject hopelessness, hearing their
loved ones had died or were not able to contact their loved ones to hear if they had
survived or not. They were not getting any help from outside and they were breaking
down at the temple, in tears, asking for help.
As a community, as volunteers at the temple, this was beyond what we knew,
beyond what we could do to help them.
We were just having a meeting once every few months of all the communities
coming together, and I brought it up at that point and said, "We need help." It was
the first time we had asked for help.
Malik said, “No problem”, and within a few weeks we had the heads of the mental
health care at our temple, sitting down with us, deciding how we can help the
community to grow.
It was the first time for the NHS where… It was an interesting conversation, the first
session we had at the temple.
MALIK GUL:
Now legendary in our story!
GITA:
It was the first time they had dealt with a community that was highly educated, had
doctors and highly educated psychiatrists in the community. They came to the table
saying, "This is what we are going to give you," and then we turned around and said,
"This is not what we want. We know what our community needs. We have the
medical backup here to prove it. This is what we know we need for people who are
having so much trauma."
It was an interesting first meeting, but I think when we both came to the table after
that meeting, we realised that we were coming together as equals rather than us as
a community passively accepting what the NHS wanted to give us.
Previous to that, we had several organisations coming through, at times asking
purely for tick boxes, so giving us leaflets and so on. We became quite jaded by that.
So we came in knowing what we wanted and expecting it to be given.
After that meeting, there was a shift in both our thinking. We came together for the
next meeting as equals, respecting each other and being able to see that we could
give each other what was needed, and we were valued as equals.
From there it was a complete sea change. For us, as a Tamil community, as a
temple community, we came with the experience of what our devotees needed, and
also a credible volunteer force who are willing to give as much as they could.
From the NHS, we got what we didn't have, which was forward planning,
organisation and particular knowledge of PTSD and trauma counselling which we
didn't have access to.
It was an incredible journey.
Within six months, we started counselling sessions at the temple with Tamil
depression groups.
I am blessed by the fact that I'm able… I'm invited into the sessions to give feedback.
It's incredible how powerful the response is from the people who get their counselling
there. The fact that it is in the temple rather than in a mental hospital or a GP unit
means that they feel safe and they feel they can actually unburden.
The fact, uniquely, that the counselling sessions are conducted in Tamil, the mother
language of the people there, means they can emerge completely in the language
they are comfortable with. It is like me trying to explain any issues in French, in
which I have done a GCSE, but that is about the limit of what I can do.
To have that freedom, to have clinical psychologists in the NHS who are Tamil
speaking, makes a huge, huge impact, a huge difference to them. It's been a
fantastic journey that we have had. The proof is in what we see there.
MALIK GUL:
That was 7-8 years ago. It was pivotal in emerging some of the knowledge in the
work we have done. It made us realise and see that, once you lock capabilities within
communities, you are able to coproduce the services that the community wants. No
longer do you have to be passive recipients. We can coproduce the services with
public institutions bringing to the table what they are good at.
Evidence-based practice, skills and training, nurses, doctors, support staff… What
the communities bring is leadership, reach, resonant, place, contacts, relationships,
history, memory, and together you coproduce something that looks very different,
that uses the capabilities of all of the parties.
As we start to tell this story, keep in mind, that is one temple. London has hundreds
of temples. In one borough, you could have six or seven temples. You can see how
you could build a mini ecosystem around that one community.
We then started to develop this learning. If I can invite in Pastor Freddie Brown, we
can talk about some of the work we have done around health groups. We know
about obesity, health, lack of training. Pastor, maybe you can share some of that
with us.
FREDDIE BROWN:
We had a conversation a couple of years ago now. We came up with a suggestion –
what would it look like if some of the men in the church who were over 50 got
together and ran a six-week exercise class?
We would show up for one Saturday, for two hours. We would go for a proper
workout session. Part of the session would be a pre-session talk, and then we will
see what happens.
We had with us a trainer, a horrible man who led our exercise sessions.
(Laughter)
We learn to dislike him in our sessions, but it was a proper trainer. We also had a
nutritionist who could give us advice about eating well.
So, the sessions began. They continued for about two hours. In the first session, we
weighed ourselves. We had our cholesterol checked, and blood pressure. That was
the baseline.
We have continued for six weeks, I think it was. You yourself participated.
MALIK GUL:
Not that it did me any good!
(Laughter)
FREDDIE BROWN:
A number of things happen. Everybody lost weight. Everybody's blood pressure went
down. A number of the men had to dispose of some clothes that no longer fit.
Everybody received compliments from family and friends. There was a camaraderie
built. Men, when they got together and were doing the exercises… The trainer would
say, "30 press ups," and you had never done five for a long time, so when you got to
10 and your training partner is there with you and you are sweating and grunting,
doing all that much stuff – it was good to get through that.
Also we would text each other during the week as well to see how we were getting
on. We were there for each other. It was a simple but powerful way of making a
difference with regards to physical health and mental health.
Also it was adjusting the way we ate, what we ate, how we ate. We took care of
ourselves.
With that learning now, in our church, it would not be too much beyond
comprehension to recreate that in another church or 10 churches.
The changes that took place were meaningful. As you know, when you get your 50s,
gravity and expansion take place. A number of us were sporting one packs, and we
didn't quite get to the sixpack in six weeks, but certainly there were differences in
that. I would say the changes are still there.
We haven't been able to do the six-week stint as we would like, but I think so far, so
good.
MALIK GUL:
And can I say that London, Wandsworth has 26 black Pentecostal churches. London
is full of African, charismatic, Pentecostal churches of all kinds of shapes and sizes.
Part of the work that we started to do was that if we can get exercise training
accredited inside communities, dieticians, nutritionists, get them embedded in
communities, all of a sudden you have a network potentially across London of
hundreds of different churches actually at the forefront of dealing with issues that are
fundamental, long-term conditions.
Already we have seen temples who can start doing exercise groups in our black
churches who can start doing mental health and well-being.
You are involved in our family therapy work. That is training local people inside our
churches, inside our community groups, inside our mosques, to become skilled in
systemic family therapy.
SPEAKER:
This was a great initiative. We found a group of people that came together that had
leadership qualities, and it is on that which we find any problems in the community,
they would refer to the Imam. Given that my role of being an imam over many years,
over a decade, in the mosque, I have found that people have already got a
relationship with their Imam.
They are looked upon for matters, whether it is marriage, divorce, people refer to an
imam, "My child is having a difficulty…" All types. And we have learned through
doing this one year of training, it did empower and give additional skills. Like, for
example, understanding something, a script, or looking into gender, the background,
the family background, that was very useful, because generally…
**Audio lost**
ALISON CAMERON:
Uh-oh. Just lost…
MALIK GUL:
Can I bring in the Doctor, who has been working with us from the beginning, at least
10 years, if not more, who has helped us try to look at the nuances behind what we
are trying to do.
SPEAKER:
I am going to be talking about some of the initiatives we did around looking at the
major problem that we have in black communities. We have got David, who was
talking as head of the mental health trust, and we know that quite a high percentage
of the work of the trust, which is delivered to people from African and Afro Caribbean
communities, and that is not unusual, because when we look at the statistics like the
way across the country, we find that people from these backgrounds are much,
much more overrepresented in mentoring health situations.
At the end of the mental health spectrum, we find people from our backgrounds
overrepresented. And that is something that concerns our community, and that is
something that, for me, I came from a background of being a management
consultant. I have done a lot of work in leadership development, and most recently,
just before, actively getting engaged in working with WCEN.
MALIK GUL:
Once you are in, you can't get out!
SPEAKER:
Absolutely. But before that, I had done a lot of work abroad, working with people that
were interested in dealing with major challenges in their communities, and then my
mother became ill, so I decided that I needed to be back in London.
As I did that, I found myself thinking, it works in so many different places, working
with people to make a difference in their own communities. But do you know your
own community? That was the trigger to discovering that the real concern was about
mental ill-health.
I wanted to try to find why this was so difficult to solve. It was something that brought
mental health practitioners and governors, and they were trying to make it well. But
have they made a difference with it? With that, I decided to bring groups of people to
talk about what it was that was key to put in place.
As I did that, I started to learn and understand that people in our own communities
have huge insight into what are some of the factors that maintained this challenge
that we had. And one thing to realise is, actually, we have high stigma, we did not
want to talk about it. We were really afraid of it. We wanted to deny it.
We didn't want to acknowledge or recognised when Mental Health capacity was
reducing. But also, a group of people often have dealt with a lot of hardships, and we
are used to taking on another problem, and not thinking that, actually, that is
something that we might need help with.
All of those factors were factors that I began to realise were contributing to it, and it
became apparent that the way in which most of the efforts that have been put into
solving the problem have been located in different trusts, and with mental health
practitioners coming together to talk about what they could do for the community.
I realised, the community had a huge amount of insight, a lot of skills, a lot of
knowledge, but there were also things that only the community could do to make a
difference.
One of the issues, for instance, was the amount of distrust that had been built up
over time, because of experiences of racism, experiences of discolouration, stories
that get passed on, etc, people did not trust the health service. People did not trust
health practitioners.
What I was told was, when we have a problem, we would rather go to a leader. We
would rather talk to them and find out, that is where trust is located. If that is the
case, then it seems important that we actually build that in to any sort of process
designed to bring about some sort of shift.
That really was the start of doing that. As Gita said, out of that process came the
opportunity to link with commissioners and the trust, and to talk about how we can
bring those systems closer together. But for me, the important thing is to recognise
that community people need to be key actors in design and also the delivery of
services.
Those are the people but hold a lot of the information, the knowledge and the insight.
Without that, we just do not have the capacity to be able to design the types of
change mechanisms that are needed to deal with some of those really difficult
issues.
MALIK GUL:
Thank you. Our starting point is not actually health. Our starting point is citizenship.
Any London borough, any area of the country, or elsewhere, we have active citizens,
who have concerns about the communities, about neighbours, about friends, as any
healthcare institution is. And what we have heard from around the table is, actually,
the capabilities to address these issues are also inside our communities.
If we can activate citizenship, if we can look around our borough, and look around
London, "where are the places of active citizenship?" Is but they are in our temples,
our places of worship, or recreational associations, in the mother and toddler groups,
this is where citizenship is alive and kicking, and well.
If we can activate the citizenship and enable citizenship, people like David and our
institutions can help to enable this community to look after itself. What you then end
up with is, you don't end up with a healthcare sector that is GPs and hospitals, and
health centres, you end up with a healthcare centre that is GPs, hospitals and health
centres, and a multiple layered community. It starts with identification and knowing
who your neighbours.
The black community and the Hindu community, or the public institution community,
they are not separate communities. All of us are actually impacted by the same
things. We all get sick. We all have mental health difficulties in our lives. We all,
sooner or later, will have issues around end of life care, dementia, long-term
conditions. These are the things that bind us as a community.
If we can deal with these things collectively, we can then deal with health care.
David, do you want to add to that from an institutional lens?
SPEAKER:
Something Doctor Carley said about trust, it is really important. If people don't trust
institutions, there is no point like me saying, "They should do, there is nothing
wrong." We have got to accept that and look at how we provide that differently.
If we don't take that on board, we will perpetuate the same thing.
SPEAKER:
One thing I want to say is, with the NHS, it is a fantastic institution. We are lucky to
have it. We previously worked with a one size fits all. It is us as different communities
taking social responsibility, and saying, "This is what we need." And working together
to do so.
The other aspect is, the one joy of having a community and a network is also that we
need each other. Along the journey, we have made good, lasting friendships with
other communities, and learnt and been inspired by them as well.
What is happening in the black churches is something that we can transfer to our
temple as well. And what is happening in the mosques can do so at all.
I have worked with a Muslim group in Tooting on things that might work as well.
MALIK GUL:
We are reaching the end of our session, but there is one thing I want to leave with
you. When we see the world around us, we don't actually see the world around us
through our own eyes, we see the world around us through the ideas that are inside
our own head. This is how we view the world around us.
The idea in our own head is that we are resourceful and capable communities, and
talented everywhere. And once you have that idea inside your head, start looking at
the infrastructure around you in a different way. A lot of it has already been
happening in Wandsworth.
These are real things that are actually happening, and have been happening for the
last 5-6 years. Kamal will put up a map of the whole system we are working on, and
we hope to continue to share it locally, see how we can share this work more widely
for all.
ALISON CAMERON:
Thank you. I have no idea if they can hear me anymore.
Well, that was... Eventually we got there with Wandsworth. Fantastic. Focusing on
strengths and richness and all of these positive words.
When you are a passive recipient of health and social care services, these are not
words you here used that often. They are doing it in Wandsworth.
Let's take up their challenge and see it happen elsewhere.
I am going to bring the session to an end now because we need to hand over to the
King's Fund, but for now thank you very much for listening and thanks again,
everyone from Wandsworth. That was fantastic.