Tuesday 18 October 2016
Who was here:
Ian Penfold (co-chair) / Marcia Lawman (co-chair)Ross Thorpe / Fi Biggs
Hayley Bishop / Carl Maunders
Mo Rowe / Helga Firth-Bernard
Diane Tassie / Ann Barker
Alison Cooper / Tracey Carus
Tania Peckham / Laura Timms
Bernard Pearcey / Rose Gubby
Rosemary Goodrich / Linzi Holt
Nicki Bishop / Lee Dauscha
Nikki Mulligan / Florence Garland (admin)
Apologies: Stuart Vail, Lee Major, Cathy Marshall
Notes of the last meeting and matters arising
Page 2: paying for care charging policy consultation -
Idea 2 (95% - to 100%) no longer being put forward. See Flo’s email. If you would like to go to the meeting in Winchester, please email who will give you information about the process.
LIG money: we have under £2000 left. Bank charges will apply from now on. Speakeasy advocacy would like to pass on the accounts to someone else. Please let Florence know (or Ian) if your organisation would like to take over the accounts. There are a small number of entries per year (less than 10). It is not onerous.
Health action plan: see Ian’s email. Copies of the questionnaire were given at the meeting.
C.C.G meeting - at Princes Hall Aldershot – patient care pathway. Tuesday 25th October from 1 pm to 4 pm. Ian/Rose and Marcia to go.
Fiona Biggs
Consultation about GP and mental health services in north Hampshire, following from Madeline Close’s health report.
Ian said that it was very important that people got involved. Fiona will get in touch with advocacy services and groups and will come back next month to get some feedback.
service user involvement
Report on Marcia’s visit to the South East Regional Forum for People with a Learning Disability
On the 14th September 2016 Marcia travelled to London with support from Speakeasy Advocacy to take part in the South East Regional Forum.
The forum is part of the National Forum for People with Learning Disabilities and is linked to the Learning Disability Board. This is the national board for the Department of Health and responsible for all of their learning disability policy and programmes. The website link is
10 Self-advocates from London and the South East attendedalong with Marcia:
- Speak Up – a self-advocacy group from Brighton and Hove
- CLASP (Caring, Listening and Supporting Partnership) – a self-advocacy group from Wokingham
- My Life my Choice – a self-advocacy group from Oxford
- Talk Back – a self-advocacy group from Reading
- It’s My Life – a self-advocacy group Newbury
- Sunnybank Trust – Epsom
- People First – Isle of Wight
Most people had attended the meeting before. Tina the South East Regional Forum Representative was unable to come.
All the self-advocates were very good at speaking up for themselves and did not need much support from the staff who came with them. 2 members were there on their own and appeared to have travelled independently from Epsom and the Isle of Wright.
We discussed the following:-
- 3 burning Issues from each area
The following were what most groups had identified
- Transport – limited use of bus passes and train traveltraining
- Housing – lack of choice and control of where people lived and who with
- Lack of easy read information especially around benefits and health services
- Lack of employment opportunities
- Cuts to services and benefits
Marcia told everyone that the people in Hampshire were really worried about the T17 cuts to learning disability services. We also shared that advocacy for people with a learning disability is still being funded by HCC and that they are investing in new housing developments for young people with complex needs.
- Sharing Local work and updates from each area
Each group shared the work they had been doing as self-advocacy groups which included:-
- Patient surveys
- Making easy read information for their area about “what people with Learning Disabilities need”
- Writing letters to Government complaining about Southern Health
- Training for schools
- Setting up a group to challenge local government spending and attending council meetings
Marcia talked about the Hampshire Learning Disability Partnership Board and the Learning Disability Plan. She also spoke about the Self Advocacy Day in May.
- Mapping Self advocacy groups and user involvement
Most of the members talked about lack of central government funding and how they were having to raise funds themselves to maintain self-advocacy groups.
The Forum said that self-advocacy is where people talk about what they want. User Involvement is where people are asked to talk about certain things in their groups.
Hampshire had the largest numbers of user involvement groups and Marcia explained that HCC funds us to support these groups.
- Carers with a learning disability
The Foundation for People with Learning Disabilities has formed a Carers with Learning Disabilities Network. Two guest speakers came to talk to the group (Patricia Charlesworth and Christine Towers) to raise awareness and ask about experiences.
Marcia was able to say how the Partnership Board reps did a report on family carers in July and spoke to about a 100 people with a learning disability. Only 2 people said they were carers and that they didn’t get enough support.
- Learning Disability England
The Forum discussed if they should join Learning Disability England. This is a membership organisation for:
- people with learning disabilities
- families and friends
- Providers
- Commissioners
- National and regional learning disability organisations
- Development and training organisations
People felt that they needed more information about what an individual’s £12 a year membership would buy them and how the views of people with Learning Disabilities would be prioritised within the group.
- Government Select Committee report on the Equality Act
People briefly discussed about the report and how not many people knew about it.
The good things about attending this Forum:-
- We were able to find out about other self-advocacy groups in the South East and the things they do
- It was good to think about wider issues that affect people with a learning disability – such as Southern Health and the Equality Act
- We were able to tell people about the work done at the Partnership Board and advocacy groups in Hampshire
The things that were not so good about attending the Forum:-
- It was a long way to go for a 3 hour meeting
- We didn’t get the chance to talk to the self-advocates outside of the meeting – there was no free time
- Some of the things the group talked about were complicated and as we didn’t get much time to prepare it was difficult to understand
- Most of the things the group talked about were political and very negative
- There were lots of different names being used and it was difficult to understand what people were talking about
- They went from one subject to another without a break in between so it was difficult to keep up
- Only very able self- advocates would be able to come to this Forum, and it did not include people with complex needs or people who were non verbal
Marcia said
For the future
The National Forum for Learning Disabilities funding is due to finish in March 2017 therefore the future of the group is uncertain.
We think it would be useful to keep in touch with the group because they have links with government bodies that help make decisions for people with a learning disability. They also discuss issues that are nationally important and it is a way of linking in with self- advocacy groups across the South of England.
However it is probably better to do this by remaining on their mailing list and sending our reports and feedback by email.
Hampshire LD Partnership Board
Bev Meeson gave us an update on health (TCP - transforming care partnership).
Health is looking at champions in different areas.
The Partnership board raised issues with ambulance service, opticians and dentists.
The 3 year plan for health is:
- Housing
- Develop community services
- workforce
See presentation for further information (scroll to bottom of the page)
The Partnership Boardwill work on the following topics in 2017:
- Support (March meeting)
- Health (June)
- The right place to live (Sept)
- Supporting parents and families (November)
The 5th topic is relationships and sexual health (which can be worked on separately). We can also talk about matters that are close to us in the LIGs.
Safer place scheme – Tracey Carus
Safer place scheme is very important for people. It will be used for Launchpad and transformation in the day service as well.
HCC to work with voluntary organisations to get the scheme up and running again (some areas are better than others, some towns do not have the scheme).
Tracey has applied for a grant to the police (printing, videos etc).
The potential could be very good.
It is currently for learning disabilities but could be extended to other groups too. It would be good to join up the scheme with the dementia friendly scheme as well as GP friendly surgeries.
Basingstoke was the first town to promote it (pilot scheme, Dominique Rawlings) but it seems that only the Discovery centre (and maybe a few other places) still do it. So it needs to be refreshed and monitored properly.
The contact for the time being is Tracey Carus.
Laura said that we could apply the scheme to buses/big shops/corporations.
People have a card with contact details and they can show it to the shop owner who then makes contact with the person on the card.
There is currently no way of checking if the scheme has been successful or not. We know of one or two good stories.
Doing things on line – questionnaire - Ross Thorpe
The digital HCC team is working on a pathway to help people finding information on the internet if they want to.
Ross gave us an early draft of how the questionnaire could look like. This would help people getting information from the council. The telephone line will still be available.
Notes for Ross:
LD adult services – out of county support
Page 1: question 1: does not add any value.
2nd question: too wordy, no jargon.
Please use plain English for example: where do you live?
Are you looking for yourself or someone else?
There will be a side bar with different sections. You can tick as many boxes as you like. It will be possible to skip questions.
Being safe: we don’t like. Preventing accidents better
About yourself: change to personal care
Another word for improve please
In your home: about your home,
Housework
Laundry x 2
Housing: change word
Gardening needs to be added
Advice about getting on line
Add Fraud please
Correspondence – letters and emails
Links please to advocacy
Box for staying safe (how to get hold of a blue badge)
Separate transport and activities
Leisure and activities + exercise
Work rather than “employment”
Making friends/relationships
Safeguarding: should have the telephone advice line
There will be a search box to Connect to Support website.
You will be able to print the leaflet/guide, or email it or save it. If you need to save it, you will need to open an account and it will update the guide, as and when there is more information.
End of meeting
Dates for your diaries
The next meeting will be on 15 November2016Elizabeth Hall, Hook, 10.30 am to 12.30 pm latest
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Elizabeth Hall, Raven Road, Hook RG27 9HH (room 4).10.30 am to 12.30 pm
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