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User Group Review 2002


What progress have we achieved in the first year of the ILF Client User Group? (CUG)

  • We have all been invited to join the CUG, therefore the ILF recognises our expertise and values our contribution.
  • The CUG is an opportunity for ILF users (and parents) to be involved. We all have different experiences from different areas of the East Midlands. We would like to increase the membership of the CUG, by extending an invitation to PA user’s in Nottinghamshire, Derbyshire and Leicestershire.
  • Everyone has found the information we have received from ILF and each other helpful.
  • We are not a campaigning group but an advisory group, our opinions are important.

Accessible information

ILF are reviewing their information and asked for the views of the CUG. We were involved with the review through our discussions within the group.

We had 2 staff from ESRI (Ergonomics and Safety Research Institute at Loughborough University) attend one of our meetings to discover what information we wanted to see in the ILF literature.

We have had feedback re: accessible information. Changes to ILF literature have already taken place, e.g. now using Arial font, size 14, left justified, no underlining etc. to produce accessible information for everyone.

This is an ongoing discussion topic.

Communicating with ILF

CUG were asked about changes to application forms, to make them more accessible, so that the forms could be completed by individuals claiming ILF funding, rather than by a third party.

ILF produced their first Newsletter. We all appreciated the newsletter and would like to see 4 issues a year if possible.

Telephone enquiries, ILF offering to phone back client to reduce client costs. Written communication, fax, all discussed and improvements in the pipeline for the future.

Technology, many of us was interested in communicating in this way. Email, web page both being developed by ILF

We would like the ILF to consider Disability Equality Training (by a disabled person) for all their employees, also for the visiting Social Workers. This would increase staff awareness of disabled people generally; also improve communication.

Issues around employing PA’s

Rates of pay, recruitment, agencies, responsibilities as an employer, contracts of employment, grievance procedure, all discussed and concerns raised. We would like to have this as a discussion topic again, to include confidentiality of PA’s.

ILF producing specimen contracts of employment, job descriptions, application forms, advertisements, etc. would be helpful, particularly to new PA users.

ILF are in the process of compiling a list identifying sources of support and contact details for PA users to access. CUG did feel that the main source of information for us was from voluntary organisations, like CIL’s. This could reduce our choice and compromise our confidentiality, as we might know the workers from these groups. Some of us felt that we would rather not access these groups for advice.

We would like the ILF to consider employing a liaison worker. Someone clients could ring for advice about funding, who would treat the information confidentially and impartially.

Annual Review

Discussed with CUG, asked about our thoughts and experiences of the Annual Review process.

CUG acknowledged in the Annual Review booklet and photographs of members of CUG in the booklet. This informs ILF users throughout the country of the group’s existence and how seriously ILF take our comments.

ILF want our ideas on how the group could be developed in other areas of the country. Demonstrates the success of the group.

How could we extend the group in different ways in different areas of the country?

Open meetings or yearly meetings in variety of areas, e.g. London, Wales, Scotland, Northern Ireland, North and South of England. Inviting Social Workers, Disabled organisations, and PA users.

Presentations to organisations with ILF users involved

Telephone, written consultation or email with ILF users throughout the country to widen user involvement.

ILF users invited to contact the CUG with their ideas. This could be through a Newsletter and web site about our meetings. A summary of the minutes could be included on the web and in the newsletter. Encourage ‘chat room’ response, with any discussions topics or queries of their own.

Future discussion topics for the Client User Group

Definition of personal care? What can a PA do?

Financial assessments? Including allocation of funds, ceiling funding and paying PA’s for accompanying us on holiday.

CUG like the format of the bi monthly meetings and all feel they have the opportunity to give their opinion.

Appreciate Holly and Trevor’s guidance and support. The information they have given us has been invaluable, also they listen to what we say and act upon it.

ILF User Group Chair 26th September 2002

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