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User Group Review 2004

The ILF User Group was formed in September 2001.

11 members regularly attend meetings, 7 female, 4 male.
7 are ILF users
4 attend on behalf of family members

Members are from:
Central Nottingham
Derby (4)
Leicester (2)
Ripley Derbys
Worksop Notts
Bottesford Nottm
Selston, Notts

Meetings are held every 2 months on the 4th Wednesday of the month, at the ILF Offices in Nottingham.

Remit of the User Group
The purpose of the User Group is to be a forum for consultation between the ILF and some service users.

Individual service users give feedback on their experience of the ILF, and comment on current and future changes to the Funds’ literature and how this might impact upon users, also to suggest improvements to the service provided by the ILF.


ILF Application forms
Majority of User Group said someone else filled the ILF application form without our knowledge.

Information leaflets
75% of UG hadn’t seen the information leaflets before
Tanya Navarro and Magdalen Galley from ESRI. (Ergonomics and Safety Research Institute at Loughborough University) attended a meeting to discover what information we wanted in the ILF literature.

Following consultation with User Group, changes were made to ILF User Guide literature, including application forms. This means that individual applicants will have the opportunity to make an informed choice when applying to the ILF.

Separate cards were used for the User Guide, which has made it easier and simpler to find the information you require, rather than looking through the whole booklet.

At the opening of the new premises on 12.03.03 met with Minister of Disabled People, Maria Eagle.

The new User Guide literature was displayed, and received positive feedback. Maria Eagle was very interested in our involvement and expertise, congratulating us on our input.

The User guide will be reviewed every 6 months.

A Professional User Guide, which is more detailed (for Social Workers etc.) will be on website from April 2004. Amendments will take place every 3 months.

Communication and the ILF
We felt there was little communication between PA users and ILF. We only hear from the ILF annually for review of funding. This was thought to be a ‘bad news’ letter.

ILF produce a regular Newsletter, Spring and Late Summer, also a summary of the Annual Report.

The User Group offer ideas of what we would like to see in the newsletters re: style, layout and content.

  • Improvements in ILF contact details in the newsletter.
  • Will report any changes to ILF for users.
  • Newsletter to Social Worker and other organisations.

ILF now have a named worker for each ILF User.

ILF rings back clients if they request.
0845 telephone number, which means it’s the same cost of a phone call wherever you live.

Many of us were interested in communicating in this way. Email facility to converse with ILF
Computer disk, giving privacy to non-writers

  • Email for every member of staff.
  • FAQ’s on website.
  • Information about UG on the website along with summary of our meetings.
  • Invitations to users to contact UG with any questions.
  • ILF tendering for website company to help set up web site for the future.

Disability Equality Training for ILF staff
The UG are in the process of passing their ideas of what Disability Equality Training may be useful to the ILF. Suggested that a disabled person should carry out training.

Disability Equality Training is in the ILF training programme from April 2004.

The User Group have recently written a glossary of acceptable and unacceptable terminology, to encourage consistent use of language, which will benefit the ILF staff during their communication with ILF Users.

Development of the User Group
ILF and User Group want to increase consultation process. ILF have developed open days, information days and road shows in other parts of the country, e.g. London and Glasgow Road show.

Satellite groups around the country feeding into User Group meetings.

Consult through website and newsletter, also letter to ILF users with review inviting their thoughts and ideas.

Liaison Worker
Kate Blenkinsop became our part time Liaison Worker in May 2003.

Jonathan Duckworth full time became new Liaison Manager in 2004.

Employing Personal Assistants
Difficulties of employing PA’s:

  • Competing with other agencies
  • Low hourly rate, difficult to recruit and retain PA’s
  • Lack of assistance when recruiting PA’s
  • Advertisements, application forms, job descriptions, interviewing, safety of employer, confidentiality, police checks, references, rates of pay, holiday cover
  • Recruitment expenses
  • Insurance for Employer liability
  • Income tax and national insurance
  • Maternity pay, sick pay and holiday pay?
  • Contracts of employment & Grievance procedure

The information leaflets now cover some of these issues. Having a Liaison Officer is also helpful to sign post users to other agencies.

Annual Report

  • To have “a day in the life of a PA user” to give positive image of users
  • Quotes of PA users and the impact ILF funding has had on their lives, rather than just smiling in photo’s
  • Information about UG

Definition of Personal Care
The definition used in the Trust Deed was quite narrow and consideration may be given to redefine the term. We raised the following points:

  • The definition of Personal Care was restricted to the home and did not cover social activities.
  • The definition needs to ensure that people with impairments have equal opportunities to do everything they choose to do.
  • The definition of Personal Care is actually very wide everyone has a unique lifestyle.
  • There is no mention of quality of life in the definition.
  • We wanted a definition of Personal Care that underpinned the principles of Independent Living.

Inland Revenue Research
The Inland Revenue were carrying out research into the Simplified Deduction Scheme. Some members of the User Group gave their individual response to the researchers.

A researcher for the Inland Revenue was invited to our May 2003 meeting to enable the User Group to hear about the findings of the research and give a group response.

Recent discussions

Freedom of Information Act
We were asked our opinions of the Freedom of Information Act, the information the ILF publishes. Our comments included:

  • The minutes of the User Group meetings should be available as hard copies, also on the website.
  • Staff, how many, which department do they work in.
  • Statistics of ILF Users - information about people rather than their impairments.
  • Comparative statistics what happened over 5 years.
  • Large print copies
  • The UG and the expansion of the consultation
  • The stages of application to the ILF
  • The Criminal Records Bureau, more information

Hidden costs of employing PA’s

  • Recruitment – advertising, interviewing (room hire)
  • Training for new PA’s
  • Stationery, paper envelopes, print cartridges, photo copying, stamps, wage slips, etc
  • Communications, phone, mobiles, emails, texts, fax
  • Extra car insurance
  • Extra PA for emergencies
  • Bedding, soap powder, laundry costs
  • Equipment for PA’s - Disposable gloves
  • General wear and tear, breakages, damage
  • Tea, coffee, milk etc.
  • Paying for PA at social events (entrance fees etc)

User Group would like to see Guidelines for hidden costs i.e. what hidden costs ILF will pay for.

Comments from User Group – May 2004

About the User Group

“ILF listened and acted on what we say”

“ILF changed because of us”

“Seeing ILF working, real people, easier to contact ILF”

“This group couldn’t happen without experience of disabled people using ILF”

“Like format of meetings and meeting every 2 months”

“I’ve learnt a lot about ILF”

“Would like questions about meetings so can think about it at home before the meetings”

“There is a fine line between individual experiences and becoming a self help group – it’s about right”

“Like meeting people at the ILF meetings who are in the same boat at me”

“Invite new members from Northants and Lincoln, who are not represented but within the county”

“Inland Revenue research really positive”

“Simplified deduction scheme rather than PAYE”

“We have unique feedback to give”

“It’s a social event as well”

About being a PA user

“ILF is one cog in a big wheel of the lives of ILF users”

“ILF is a business to us – time, skills, knowledge, but unpaid”

“Employing PA’s is like running a business”

“Disabled people are real employers”

“It’s hard work”

“More stress than I need”

“Independent living is a 24 hour job”

“You need stamina”

“There’s little support available”

“It’s expensive to run a PA system”

“Direct Payment and ILF users have a multi functional role”

“We meet or have contact with a multitude of service providers”

“We have, as individuals, a broad network or organisations and experiences”

“We are skilled at the resources we tap into”

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