Dear Friends and Supporters,
Self-Advocacy
Campaigns & Projects
Some of Ife's Ambient Jam Art
Ambient Jam
We have continued our visits to Ambient Jam to explore the question “how can people labelled with profound and multiple learning disabilities (PMLD) contribute to policies and decisions that affect their lives”?
Last week, we invited Professor Nicola Groves from the University of East London. She noticed many moments of what she called “reciprocity, empowerment and connection”. She said that the dancers and artists at Ambient Jam were very sensitive to each other’s needs, which was very powerful to see!
The Lewisham Speaking Up reps have also been going to Ambient Jam sessions over the last two years. Ife came to a session and drew some pictures of moments throughout the session. She reflected on how art can be used to advocate for yourself:
Ife
“Art to me, is beauty and love, gives me happiness and I feel so inspired being an artist. It makes me feel creative”
We will reflect on all of our visits to Ambient Jam, and how art, music and movement can help us communicate and advocate. This will be the theme of our September People’s Parliament, where the Ambient Jam Collective will join us.
Please come along on Friday 18th September for this exciting People’s Parliament!
We Can’t Wait Update
We have worked with other self-advocacy groups on the We Can’t Wait campaign, where we are asking the NHS to give priority and more support to people with learning disabilities on hospital waiting lists, to stop them dying before their time.
The national working group have been working hard to get the campaign to the House of Lords, and we will be going in July! Look out for our next newsletter to learn more.
Locally, we have been working with Lewisham and Greenwich hospital trust on their “waiting list optimization” work. They are identifying people on waiting lists who might need more support and quicker turnarounds. This includes lots of different people, but we asked them to make sure that people with learning disabilities are included in this. We met with the team and the learning disability nurse to make sure that people identified get the right support. We also want to make sure that over time, different departments in the hospital get better at supporting people with learning disabilities when they come into hospital.
We also worked with Bromley Together to talk about LeDeR. We talked about what is good about LeDeR, what isn’t so good and what needs to get better. We said that Integrated Care Boards should be held more accountable to make changes based on LeDeR reviews.
BILD Reasonable Adjustments
Some of our self-advocates have been working with the British Institute of Learning Disabilities and King’s College London. They have met with health and mental health professionals to put together some reasonable adjustment guidelines. This includes lots of suggestions for making things better for people with learning disabilities who go to hospital or the doctor.
LSU trustee Sam was chosen to be part of BILD’s ethics group, and is working on guidelines for hospitals when using AI! One of our reps Dinesh was chosen to be part of their autism reasonable adjustments group, to make guidance for supporting patients with autism!
People's Parliament
We held our June People’s Parliament on “Social Care”.
When we voted for the themes we would like to talk about this year, this theme was the winner with the most votes. We had to make sure we did it justice and spoke about all the important topics that people needed to discuss!
We had a presentation by Gary Bourlet from Learning Disability England, over video. He told us about the Good Lives Framework that was designed by people with learning disabilities and their supporters to show decision makers what people need to live a good life. There is a section in the framework called “The right support”, which talks about what social care should look like for people with learning disabilities.
We were delighted that Ben Mant, chair of the Lewisham Safeguarding Adults Board joined us to help run a workshop. We will also present our findings from the Parliament at the next Safeguarding Board meeting.
The People’s Parliament happened the week of the 15 year anniversary of Winterbourne View. It is still very painful to hear about what happened, and similar things still happen today. People said that they want to be more confident that the people trusted to support them won’t cause them harm.
We had 3 workshops where people shared their views. These were:
1. “What does good support look like?” People talked about their good experiences with support workers, managers and social workers. They shared what they need to feel supported
2. “When things go wrong.” People talked about how to make complaints and what happens when you complain about bad support. They also talked about organisational abuse.
3. “Activities and community.” People talked about the activities they like to do, what makes them feel part of the community and what their supporters should do to help them do these things
Watch out for the full People’s Parliament report soon!
Our next People’s Parliament will be on Friday 18 September
from 10.30 – 3.00 at the Catford Civic Suite.
(join us for a special Parliament working together with Entelechy Arts)
Theme: Creativity and Communication.
Email Ellie at ellie.spirrett@lsup.org.uk or phone 020 8692 1862
1-2-1 Advocacy
Finance Advocacy
It’s been another busy 3 months for the Finance Advocacy Service.
We have good news! We have managed to apply and get a participant their Universal Credit limited capacity to work. This means they will be better off by £460 per month.
This money will help a lot with bills and budgeting for food, which is very important for eating healthily.
CAP- Christians Against Poverty
The Finance Advocacy Service has been working with a very good local debt advice and advocacy service called CAP (Christian’s Against Poverty). CAP will meet with you (and your advocate Michelle!) first. Then CAP will help to sort out what your debts are, who you need to pay back, and the amount you will need to pay back. CAP will contact the people you owe money to, and speak to them. So, you no longer have to deal with them.
The Disabled Persons Railcard
Holiday and day trip season is approaching! So, did you know…that if you claim PIP (Personal Independence Payment) or DLA (Disability Living Allowance) you can apply for a Disabled Persons Railcard? This Railcard is great to use for holidays, daytrips and weekend breaks!
The Disabled Persons Railcard gets you and an adult companion 1/3 off most National Rail tickets in Great Britain. It costs £20 for a 1-year card or £54 for 3 years.
You can apply and download a digital version for immediate use on the Disabled Persons Railcard website or you can apply for a plastic wallet card to be delivered to your house within 3-5 working days.
Phone Michelle on 020 8692 1862 if you need help with debt issues or would like to apply for a Disabled Railcard.
Community Advocacy
Hi guys
Last year I shared with you my concerns about the importance of having good support workers or carers. Many of you said you were not always happy with the help you received. I’ll share with you two different experiences of support being received by participants.
One participant required support in reading her correspondence, preparing meals, support with shopping, laundry and cleaning. These duties were stated clearly in her Package of Care. However, they were not being followed which left her feeling very depressed and anxious. I suggested to her that when the carer arrives, she tells them precisely what she would like done. She explained that she does that, but she is told they do not have enough time.
I investigated this and was told that sometimes when the carer arrives, she would cancel them if it was not the same routine carer. Also, the participant confirmed that she does not always like to ask for their help because they are already busy and she does not wish to upset them.
On a different note, we all know the saying ‘first impressions count’. This will normally help us decide if we’d be able to form a good, trusting bond with a person. Let me tell you about an experience one of my participants had when she was introduced to her new support worker.
In the meeting the participant emphasised to her support worker ‘we are going out next week to a special event, which is very important to me so please arrive 10 minutes early.’ However, when I contacted the participant for an update, she pleaded for an immediate replacement. I asked why and she explained without taking a breath:
‘when she arrived at my house she was late, she wanted to use the ladies immediately, she wanted to charge her phone, and when we got to the event, she talked non-stop, when I told her to be quiet, she started to take photos and videos of the procession which was wrong and lastly, she kept clock watching.
I enquired gently, ‘you would not consider giving her a second chance then?’ After a few minutes of receiving the strong silent treatment, I told her not to worry we’ll look for someone else. We are currently in the process of looking for a suitable support worker. Join me next time to find out if she’ll be happy with her new support worker!
This second example was someone being very clear about what they expected from their support worker, but still the experience did not feel very person-centred. Obviously, support workers have their own needs and it can be a tough job, but I feel that the wishes of the person receiving support should always come first.
It’s important that you say what you require help with and repeat it if necessary. If it is not done, then make a note of it if you can and report it to their office.
Participants will not always get the same carer or support worker. They might go on holiday; they may be sick or unwell; or they could have left. So it’s still important that you request what you need help with from the new support worker.
If you don’t require support the following week, or on a specific day, be sure to contact the office and let them know in advance.
If you decline to do that, someone else could have benefited from that help, and there is still a charge to pay even if you did not receive any assistance.
Regular Events
BIG GROUP
Don’t forget to join us on the last Wednesday of every month at 10:30 at the Leemore Centre. We talk about interesting topics that you told us you would like to discuss.
The next Big Group is Wednesday, 29 July
ZOOM GROUP
Every Tuesday at 4pm we meet on Zoom to catch up with each other but also to talk about what’s been happening in the news and other interesting topics.
MUSIC GROUP
Join our popular Music Group on Fridays at 5pm-6:30pm where you can share your favourite songs and what they mean to you!
Contact us
General email:
Phone:
020 8692 1862