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North East Regional Forum on Learning
Disability
Notes from a meeting held on 15
thJune 2011 at the TAD
Centre, Middlesbrough
Who was there
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David Hodgson Northumberland User Forum
Paul Regan Gateshead People / National Forum rep Sharon Cook Sunderland People First
Laurence Cook Sunderland People First Andy Fox Sunderland People First Paul Mackay Northumberland User Forum Jane Mackay Northumberland User Forum John Bland Northumberland User Forum Helen Gibb Northumberland User Forum Gillian Ions Northumberland User Forum Sharon Schmidt Spiral Skills
Sam Smeaton Spiral Skills
Barbara Taylor North East Regional Mencap John Soulsby Gateshead People
Alex Tate Your Voice Counts Audrey Wilkes Gateshead People Janet Hall Gateshead People Steven Stuart Gateshead People John Soulsby Gateshead People Brian Devine Durham Parliament Andy Collins Durham Parliament Stephen G Durham Parliament
Brian Smith Supporter, Durham Parliament Stephen Newcastle Champions
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Sarah Bartley PCA Independent
Jason Muldownie TEWV Learning Disability Reference Group Karren Jason’s supporter
Who could not be there
Skills for people Quality Checkers Better Days
Phil Parkin National Forum rep
Panorama programme – abuse at Winterborne View
Most people had seen the BBC programme about the abuse at Winterborne View.
We broke up in to small groups and talked about how to stop this happening in the future.
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Services need to be checked by people who use them. The checks need to be
done without warning. People with learning disabilities need to be trained to do this. Training builds on their experience of using these services. We support the idea of the ‘Experts By Experience’ programme which the Care Quality Commission are developing.
There is a problem with the way that services are commissioned for people with so-called ‘challenging behaviour’. People get upset and kick off because their needs are not being met and they are treated badly.
We should ask questions at Partnership Boards and Health sub groups.
We need to meet with health and social care commissioners to talk about how they need to change what they pay for.
We should write to MPs.
People with learning disabilities need to train staff. Staff in these services should be paid better.
There needs to be much better ways of choosing staff, so that people with poor attitudes are not given jobs in these services.
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Buddy schemes could be good – people with learning disabilities are the best people to help eachother.
There needs to be really good independent advocacy to make sure people get their rights.
There needs to be better ways for people to ‘blow the whistle’.
We looked at the press release that the National Forum had done.
Barbara Taylor – North East Regional Mencap – ‘Stand by me’ campaign about hate crime
Barbara Taylor talked about the Mencap campaign about hate crime that was being run leading up to Learning
Disability Week.
Her presentation is with these meeting notes. There was a lot of discussion – people said :
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There needs to be better and easier ways of reporting incidents so that the police can get a more accurate picture of what happened.
Put the ‘Police Promise’ into action. Sign the Mencap petition.
Having good neighbours is really important.
People have a problem about using the 999 emergency number – what is an emergency is viewed differently by someone on the receiving end of hate crime and by the police. 111 is being tried out in Durham.
Sharon from Sunderland talked about the Safe Places Scheme – this means somewhere friendly and easy to report hate crime.
People suggested inviting someone from a north east police force to the next meeting.
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Nurse training consultation – Sandra Duggan and Alison Williams, School
of Health, Teesside University
Sandra and Alison came along to the meeting to ask people what things they thought people training to be nurses needed to know.
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What does a good nurse do?
being on time - punctual
easier speech with pictures if necessary
talks to us directly not just to our carers (staff or family) makes eye contact
asks if you have any questions
ask if you want support staff with you - gives you the choice
should know my needs (e.g. couldn’t get to early appointment – no transport)
helps you find your way around (ward or outpatients) personal touch
listens to me
explains what they’re doing
patience - gives us time (to say what we want to) reassuring - calms me down (might be stressed by the situation) clear communication
friendly
allows extra time if necessary makes good relationship
consistently sees me - the same nurse
allows prior visits if necessary so that you’re not worried
understands about learning disability (e.g. challenging behaviour)
is sensitive to possibility of negative prior experiences (e.g. may not want to have nurse of opposite sex )
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has some direct experience of people with learning disabilities
possibly have volunteers on ward who know about people with learning disabilities Talk to you.
Be nice to me. Talk to me in a way that I can understand. They (should) ask me do you want more food.
Not to rush.
Make sure you are calm before going for your operation. Should ask if you are OK to take medication
Explain what they are going to do Tell you how your operation went.
Give you dressings before you leave hospital for your nurse Speak clear so you can understand.
Use easy language – no jargon
Speak to the person – not just Mum and Dad
Make sure they stand up for people with other staff Use HAPs and hospital passports
Ask if you need any painkillers Don’t be frightened of people Should have proper training Patient – give people more time Choice of male or female
Keep people involved Treat people with respect
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Gather detailed info about eating and drinking Named nurse – have one person to get to know
Same nurse if you can or tell them about me when they change over
Giving people enough time - to settle into hospital - to understand – check if people understand
Challenge bad practice – question people who are rude or discriminating Make notes for carers to help explain
Use liaison nurse
Stand up for people’s rights
Have other nurses around to help
Don’t take it out on the patient if having a bad day
What do you think we should teach student nurses?
communication
to have more patience to show respect
to be able to cope
to recognise when people need extra support - consider the whole person
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to be helpful
how to signpost on to other resources
some need to be trained in sign language or Makaton. Drama and role play.
Medication
Communication and understanding Dignity
Respect
What it really feels like to be a patient / service user (take the role on for a while) Placement as a patient
How to support people to speak up Makaton
Body language
How to keep people clean Epilepsy and fits
Experiences that people have had Valuing people
Autism Disabilities Blindness
History of services that people have used Different ideas about values
DVDs made by us
The lives of people with learning disabilities (told by us) How people ‘tick’ (psychology)
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Awareness of the different needs that people might have e.g. communication needs and issues
Health and Safety, First Aid
Training by people with learning disabilities about abuse Mystery shoppers – very useful
Assertiveness / negotiation
What activities could we use at the beginning of the training programme?
Meet people with Learning Disabilities - the earlier the better. - form links with local groups
- come to groups like this - we could visit the students
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How can we involve people in assessing students?
Mock interviews - we could assess their communication skills
Could assess them at Dr’s surgery - how well did they treat us?
Another idea:
Could have someone with LD on panel to help train students Bigger, clearer, simpler signage in hospitals
(‘Nice to be nice’ report in development)
Service users to do report on students – ask patients how they are treated. Interviewing before start training
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Words to describe a good nurse
Kind Caring Calm Nice
Good at sign language Friendly
Care about people and check on them Polite
Non-judgemental
Good listener – see what isn’t said Non-condescending
Trustworthy Confidential Assertive
Practical Ideas
Use Self-advocacy groups
Day centres and supported housing (same person) Independent sector and SS and health
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Time with Speech and Language Therapists and psychology (short-term Mental Health)
What does a good nurse do?
Check with me (if I have a supporter) whether I want a supporter with me or not.
Use their initiative Be well organised!
Give people enough time
Reads all the notes and gets all the information Doesn’t make assumptions about me – find out! Gives you really good, clear information
Is focused on my needs, not the system e.g. longer appointments, visits beforehand etc.
Doesn’t lose their temper
Has a good bedside manner – for example, checks with people, is calm, doesn’t lose their rag, has a good sense of humour.
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Is flexible
Checks things I’m allergic to.
Be able to chose a male or female nurse ( a good nurse would ask) Makes sure people know they can talk to you
Good attitude – for example, talk to the patient not their supporters
Asks whether people have got a health action plan and annual health check Make sure people really agree (consent) to things
Doesn’t lose their temper
Understanding people with learning disabilities – awareness of people’s communication needs, for example
Be a really good listener
Helps me a prepare for an appointment (for example, talks me through things) Tells other staff things they need to know
Treats us as they would want to be treated – for example, with dignity and respect Challenges bosses and colleagues when things are not right (whistle blowing!) Ask if you want to talk to family members or supporters
Has different ways of helping people to relax and deal with things they’re scared of. Keeps up to date with things that are happening (new government laws, policies –
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Report from the National Forum
The Government had cut the money for the National and regional forums by around half.
This meant that only one rep could go to national meetings from each region. National meetings were now only one day rather than two.
The Government planned to put the support contract for the National Forum out to tender, and planned to make a decision about this by the end of September 2011.
