You are on page 1of 15

Getting advocacy right:

Supporting people with a learning disability and/or autism


with behaviour that challenges, including those with a
mental health condition
In 2015, the Local Government Association (LGA) and Inclusion North
ran a number of advocacy workshops as part of the Transforming Care
programme of work.
The Transforming Care programme aims to ensure that people with a
learning disability and/or autism with behaviour that challenges are able
to access good quality care and support in their communities; the
expectation is that there will be a significant reduction in the reliance on
inpatient care settings for this group of people.
The workshops were used to share innovative advocacy projects which
are supporting people and families to have a voice - in particular
focussing on those people with a learning disability and/or autism who
are in inpatient settings or those who are at risk of being admitted to an
inpatient setting.
We asked the advocacy projects who were involved in the workshops to
provide an outline of their work in order for us to collate and disseminate
this information, and enable further sharing and learning.

Bournemouth People First


Bournemouth People First is a charity that supports people with a
learning disability to:

speak up about the things they use and want


have their voices listened to and be heard
make sure things improve for people with learning disabilities in
Bournemouth

We started working in Bournemouth in 1999 and our main aim is to


increase community inclusion and tolerance of diversity by ensuring that
members are seen as full citizens with a right to full inclusion and
partnership within the community, providing self, peer and professional
advocacy for people with learning disabilities.
Project:
Citizen Checkers Service
Can you say a bit more about what the service does?
This is a service made up of fully trained Citizen Checkers with a
learning disability. The aim of the Citizen Checkers Service is to visit
services (e.g. residential care homes and supported living) and provide
an independent review of that service.
It is made up of experts by experience who will talk to people about the
service they use. It is a way of finding out about peoples satisfaction
with the service they receive and check that people with a learning
disability are being treated equally and with respect, and that they are
living as full and active citizens. It is an independent, external
assessment that organisations can use to support the quality assurance
and improvement of their own services and can be used in a range of
settings, for example residential homes, supported living and day
opportunities.
How did you get started?
Our service was set up in 2008 to work with the people moving on from
living in NHS Hospital Units. A team of people with and without learning
disabilities were trained as Quality Checkers. We developed our service
to incorporate the Keys to Citizenship and visited the NHS Units to hold
speaking up groups. Individual visits later followed to people both before
2

and after they moved on from the Units. Over a 3 year period we worked
with around 45 people, collecting answers to around 4000 questions.
In 2011 we started visiting people in local residential homes, following
the closure of a number of local day centres, to check on the quality of
day service provision that their homes were now organising.
We have worked with over 110 people in 20 residential homes in the
Bournemouth area. We have been able to show an improvement in the
percentage of positive answers given by people over a 3-year period
from 84% to 92%. This reflects an increase in the quality of provision as
well as improvements that have taken place as a result of
recommendations we have made. We have also worked with private
care providers, checking services that provide care and support for
people in their homes.
How is the project funded?
We are currently funded by Bournemouth Borough Council until
November 2015 to visit residential homes in the Bournemouth area.
What have people told you about the difference it makes to them,
families or staff and services?
Bournemouth Borough Council: the service supports safeguarding of
vulnerable adults another way of reassuring ourselves that people . . .
can talk to someone.
Residential homes: excellent analysis great audit tool.
Families/carers: its great to have people keeping tabs on these places.
Residents consistently comment that they enjoy the opportunity to speak
up.
Bournemouth Joint Health and Social Care Self-Assessment: The
service has helped people to speak up and has led to improvements in
their lives. It is an effective way to quality assure services and highlight
improvements in services that enable people to lead fuller, safer lives
and be more active citizens.
The percentage of positive answers given by people on our visits to
residential homes has gone up from 84% to 92% over 3 years. This
increase shows that:
3

our service has been able to record how residential homes have
made things better
our service has got better at gathering information
our service has been able to suggest things that could be better.
If people want to know more how can they contact you?
Contact Amanda Parsons by email at:
amandap@bournemouthpeoplefirst.co.uk
Telephone: 01202 303 765
www.bournemouthpeoplefirst.co.uk

Speakup Self Advocacy


Speakup Self Advocacy is run by and for adults with learning disabilities
and/or autism. Speakup specialises in providing accessible information
through the use of DVDs, booklet production and training health and
social care professionals about how to communicate with people who
have learning disabilities and/or autism.
Speakup also provides peer, group and self-advocacy through group
sessions, and teaches people with learning disabilities and/or autism
essential life skills to help people live valued and fulfilled lives we do this
every day.
It works with a range of organisations including the CQC, the
Department of Health, Department for Work and Pensions, Work
Programme Providers, Department for Education, Ministry of Justice,
Clinical Commissioning Groups, Citizens Advice, Money Advice Trust
and the NHS.
Speakup has developed 4 social enterprises to create more employment
and work placement opportunities for people with learning disabilities
and/or autism.
Project:
Crisis what Crisis
Crisis what Crisis was funded by Awards For All through one of our
social enterprises, The Friendly Information Company. Speakup has
worked closely with the Friendly Information Company to develop crisis
plans to help people with learning disabilities and/or autism think through
the nature of a crisis, different types of crisis and coping strategies.
Together we have developed individual crisis plans, which people can
use to show people who their circle of support is (trusted people), what a
crisis might look like, how best to support them and who to contact.
The Crisis what Crisis project has worked with self-advocates and
helped them through difficult times in their life. Through the use of peer
advocacy, self-advocates are more confident to share their problems
with friends to help them through difficult times.
Crisis plans have supported people to prevent a crisis from happening,
or a crisis getting worse. People have used their crisis plans to prompt
5

and remind them about coping strategies in a crisis and who they can
turn to for support.
How did you get started?
The project evolved through work between The Friendly Information
Company and Speakup. When self-advocates were in a crisis we found
out how best to support them through the use of person centred
approaches, such as friendship circles and circles of support.
How does it get funded?
This grant was funded by Awards for All.
What have people told you about the difference it makes to them,
families or staff and services?
Crisis what Crisis has made a big difference to the lives of people with
a learning disability and/or autism who have engaged with the project.
Everyone who has created a crisis plan has said that they feel more
supported. It also clearly shows us, when people have completed these,
what sort of support they need from services like Speakup, the Friendly
information Company and other support services.
Locally, mental health services are expressing an interest in these and
we are hoping to do a lot more with these services in the future.
Case Study
Christine is a self-advocate who volunteers at Speakup. She lived in
Shared Lives but wanted to move on and live independently. Christine
was worried about what would happen if she ended up in a crisis and
didnt know who to turn to.
Christine used the crisis plan to support her to plan her life. It
complements her person centred plan and helps her with coping
strategies when things go wrong. It highlighted that Christine needs
some structure for evenings and weekends, so we went on to develop
with her, a social timetable to help her to plan her life and not feel lonely
during her move to independent living.

If people want to know more how can they contact you?


Contact Annie by email at annie@speakup.org.uk
www.speakup.org.uk

Advocacy in Greenwich
Advocacy in Greenwich provide a range of advocacy services,
independent one to one paid and Citizen Advocates, self-advocacy and
peer advocacy as well as training projects and supporting a Peoples
Parliament for people with learning disabilities.
Project:
Independent Advocacy for people who are placed out of the Borough.
This includes in residential homes and in Assessment and Treatment
Units.
For just over a year, I have been have been working with about 17
people out of the borough, some really quite far away. Most of these
people are in residential care, and work has now stopped with a few of
these people.
Out of these 17, 5 people have been in Assessment and Treatment unit
settings, 4 people have moved out of their original units. These moves
arent all out of ATUs- but they are progressing. Three people have
moved closer to home because of their wishes to do so - two to ATUs in
the area and one to supported living nearer their family. The 4th person
has moved to an ATU closer to London and is progressing to moving
back to the area.
How did you get started?
Post-Winterbourne View, it was decided to fund this post. The initial
phase was contacting each person to find out the type of unit they live in
and their current level of advocacy input. From there, an advocate
visited them to start to get to know them and explain their role.
Some people did have an Independent Mental Health Advocate. This
would often be someone who visited everyone in the unit so could be
viewed as not truly independent and someone there just to see you.
How does it get funded?
NHS Greenwich funds the post. It was initially for 21 hours of work per
week and is currently at 14 hours per week.

What have people told you about the difference it makes to them,
families or staff and services?
Some individuals and some family members have described it being
helpful to have a contact from the Borough, who can easily contact the
local CLDT team to chase up reviews and ask questions. Some people
have said it builds their confidence to have an independent advocate
listening to and speaking up for them.
Having been there through changes of location seems to have helped to
empower people. If a person who is out of borough only had advocacy in
the unit they were in, then this would have to end each time they moved
and theyd have to start again with another person. Being there through
changes in location enables me to see more of how this affects the
person; this helps me to get to know them and to be able to support
them in the most appropriate ways.
Case study
I started getting to know the person in February 2014, in an area a
couple of hours away from London. From February to April I spent time
getting to know the person and explaining my role. The person was
preparing to move to a step-down unit so we explored how there would
be less restrictions and what the person would want to do with her time.
We did this face to face and also over the phone.
In April the move occurred. However by June this placement breaks
down. The person wants to be near family in London. I ensured I was
there to listen and to explore the reasons for moving, and likes/ dislikes
about moving back to her borough. Supporting her to really think about if
that is what she wants. Supporting her to speak up about this at her CPA
in July.
Later in July the person changed her mind and wanted to stay where
she was. I ensured I could always support her to speak up about her
view, no matter what her view is.
By September 2014 she definitely wanted to move to London. As well as
talking to her I emailed her social worker to ask questions on her behalf.
Due to the distance, she could feel cut off from the social worker and me
being in the area made it easier to get in touch with people, as Im
familiar with the local CLDT team.
9

In October the social worker asked me to get the persons views about
moving to an ATU environment back in London. In November the person
was told she could leave within a week but not given a date. I spoke to
social work in her borough and the management of the potential
placement in her borough and was able to confirm dates and then pass
this information on to her.
Now she is back in the area, I am advocating on her behalf while she
progresses towards moving to another, hopefully longer-term, less
restrictive environment.
So the benefits for the person having an advocate from have been:

A consistent advocate in different settings; Ive been able to move


with her. If she only had a local advocate then of course that work
would have to end in the previous area she was living in and a new
person would take over in London (assuming the person is offered
an advocacy service).

It has been quite a long-term advocacy partnership, which is still


continuing while the person settles in this borough; then wed look
to decrease contact if possible and lead up to ending it.

The person has shown signs of empowerment, stating to staff that


she will speak to her advocate about it when issues arise.

Due to the person being back in the borough, I am now able to be


more easily available through this period of change.
If people want to know more how can they contact you?
Contact Beverly Paterson by email or telephone at
Beverly@advocacyingreenwich.org.uk
Telephone: 0208 293 3720
www.advocacyingreenwich.org.uk

10

If people want to know more how can they contact you?


Contact Amanda Parsons by email or telephone at:
amandap@bournemouthpeoplefirst.co.uk
Telephone: 01202 303 765
www.bournemouthpeoplefirst.co.uk

11

Skills for People


Skills for People is an independent organisation run by people with
learning disabilities. We support self-advocacy, provide training to a wide
range of organisations, help people to use personal budgets, provide
some representational advocacy, facilitate the north east regional forum
on learning disability, and support people to take more control over the
services they use.
Project:
Tees Esk and Wear valleys NHS Foundation Trust, Learning Disability
Reference Group.
The Reference Group is a group of people who use or have used in the
past the Trusts Learning Disability Service. They do a wide range of
work, including devising and delivering staff training, getting feedback
from people who use the Service (and in particular the Assessment and
Treatment services), helping people to be more in control of their care
and treatment, making films on issues such as commissioning and
peoples stories, involvement in staff recruitment, and involvement in the
Trusts decision-making committees and groups.
This is a particularly important user group, working as it does in an area
of service provision that has historically been very neglected by selfadvocacy organisations.
The Reference Group is supported by a member of Skills for People
staff.
How did you get started?
Tenders were invited by the Health Trust in 2004 to support a newly set
up user group of people using the Trusts Learning Disability Service.
How does it get funded?
From the Trust, through a service agreement, which pays for the
operating costs of the Group and the time of a full time member of staff
to facilitate this.
The funding is on-going.
12

What have people told you about the difference it makes to them,
families or staff and services?
People have a better service, due to staff training and involvement in
staff recruitment by Group members.
If people want to know more how can they contact you?
Contact Dave Norman by email or telephone at:
dave.norman@skillsforpeople.org.uk
Telephone: 07500 822 134
www.skillsforpeople.org.uk

13

Northumberland,Tyne and Wear NHS Foundation Trust


Foundation Trust - Arts Therapies Department,
Psychological services
Project:
The Get Going Group
The Get Going Group is a community based group held at Brunswick
Methodist Church Hall, Newcastle for adults who have a learning
disability and who have had a stay in hospital due to a mental health
issue. The group was set up in recognition that, for some people, social
isolation, under occupation and barriers to accessing meaningful
community activities also contribute to hospital admission and
readmission in addition to mental health symptoms.
Potential Get Going Group members are invited to attend if they:
Have recently been discharged or have a planned discharge from
a mental health assessment and treatment unit
Have been identified as being likely to benefit from additional
support in the community
Would like to link with other people who have experienced mental
health difficulties
The Group runs once a week for 12 weeks with group members having
the opportunity to continue as facilitators in subsequent groups. It
incorporates mutual support and peer support within its approach.
Mutual support is a model of peer support by and for people with
learning disabilities with involvement of non-disabled people as allies.
A main aim of the group is to build peoples confidence to access
community groups and social networks so that they can then continue to
attend independently. Group members are encouraged to try out
different groups throughout, with people sharing their own experiences
of attending other groups.
You can read more about the project here:
http://www.researchgate.net/publication/270746759_The_Get_Going_Gr
oup_Dramatherapy_with_adults_who_have_learning_disabilities_and_m
ental_health_difficulties
How did you get started?
14

The group is a pilot program and we are in our fifth block of twelve
weeks and are continuing to write up our findings which seem positive.
We noticed that people who had returned to the community after a
hospital admission were struggling to meet others with similar
experiences. We therefore found a central venue managed to get it
funded by an external charity and asked for referrals from local
psychology teams. A drama therapist and a nurse psychological
practitioner facilitate it.
How does it get funded?
The staff are from the NHS Trust and the room space in funded
externally by Launch Pad, an organisation run by and for mental health
service users.
What have people told you about the difference it makes to them,
families or staff and services?
The group gives people the chance to meet staff they know once a week
and share any difficulties that they might be having. The experience for
the staff supporting the service user to join in as a group member allows
a different type of relationship to be built.
Positive things that can come out of mutual and peer support
approaches include the maintenance of supportive relationships,
building and maintaining positive ways of coping in response to stressful
events, shared experience and understanding from others who have a
mental health problem and motivation to engage in community activity
and maintain social support networks.

If people want to know more how can they contact you?


Contact Jane Bourne by email or telephone at:
Jane.bourne@NTW.nhs.uk
Telephone - the Arts Therapies department: 01670 394884

15