1. East Sussex LINk Review of the Wheelchair Service in East Sussex

2. Purpose of the Review Concerns raised by wheelchair users and their carers led to East Sussex LINk carrying out the review Review would highlight areas of good practice as well as areas for improvement Questionnaire made available in hard copy and online One-to-one interviews, offered as an alternative to completing a questionnaire or to those raising issues needing more in-depth discussion Online discussion forum using YahooGroups, and LINk Wheelchair Users Forum using Facebook Additional evidence gathered from organisations and others with an interest in the Wheelchair Service 2

3. The Questionnaire All aspects of the process of getting a wheelchair About You Getting a Wheelchair Repairs and Maintenance Special Seating Appointments Contact with the Service Overall Impression Service User Involvement 3

4. Profile of Respondents 265 questionnaire respondents 72.1% wheelchair users and 27.2% parents/carers of wheelchair users 9.8% aged 0-17, 53.2% 18-64, 35.1% aged 65 and over, 1.1% Preferred not to say 19 one-to-one interviews carried out 15 comments sent in as additional evidence 4

5. Additional Impairments 12.2% visual impairment 14.1% learning disability / difficulty 16.2% communication difficulties 10.0% cognitive impairments 8.4% mental health difficulties 2.4% preferred not to say 32.4% did not answer the question 5

6. Across the County Eastbourne: 62 respondents Hastings / St Leonards / Westfield / Winchelsea: 57 respondents Bexhill / Little Common / Pevensey: 39 respondents Polegate / Hailsham: 26 respondents Rye / Robertsbridge / Battle: 23 respondents Lewes / Newhaven / Seaford / Peacehaven: 17 respondents Wadhurst / Hurst Green / Etchingham / Mayfield 7 respondents Heathfield / Uckfield / Forest Row 16 respondents 6

7. Issues Frequently Highlighted General Frequent concern around inadequate funding / resourcing of the service Provision of cheapest option instead of thinking long- term Difficulties with transport to assessments and appointments Timescales Referrals, assessments, repairs / maintenance, appointments and general contact with the service 7

8. Communication Poor staffing levels Lack of service user / carer awareness of ability to request reviews Lack of public awareness the Wheelchair Service in general Inability to make face-to-face contact with the service Feeling that appropriate solutions were not always provided 8

9. Assessments and Appointments Service users / carers feel unlistened to Concerns around lack of transport provision Lack of privacy, dignity and respect during appointments Concerns around role of professionals in appointments Lack of consideration of lifestyle and environment, i.e. not based on Social Model approach to disability Poor choice of products Need to trial solution to be provided for adequate time Lack of alternative funding solutions made clear Lack of training when chair first issued 9

10. Service User / Carer Involvement Increased involvement of service users / carers in any decision- making about solutions provided to them Need to know that feedback given to the Wheelchair Service will be listened to Two-way communication between service users / carers and the Wheelchair Service Areas of Unmet Need Concerns around rigid Eligibility Criteria Inability of the service to consider fluctuating needs of those with long-term conditions Need for written information on appropriate use of wheelchairrs Lack of information about wheelchair hire providers 10

11. Areas for Recommendation Based on order of top priorities for suggested improvements General recommendations to commissioners Waiting times Communication The assessment process Repairs and maintenance Service user and carer involvement Areas of unmet need 11

12. The Review and the Reviewers Project led by Pat Newton, member of Eastbourne Disability Involvement Group and LINk participant Provided an opportunity to give wheelchair users and carers a voice Review group made up of wheelchair users representing variety of organisations Wealth of knowledge of issues faced in East Sussex Representing approximately 10,000 strong population of wheelchair users 12

13. A Constituency of 10,000 Organisations represented were: MS Society Eastbourne Access Group Access in Seaford and Newhaven ESDA Eastbourne Disability Involvement Group British Limbless Ex-Servicemens Association Questionnaire and interview data, plus additional evidence from members of the public responding to flyers, notices in the press and on social networks 13

14. A Shared Responsibility A more person-centred, holistic service with Easier access Greater user involvement Improved communications Safe, accessible clinic accommodation of suitable size Provision of staffing to cover absences Revision of Eligibility Criteria Adequate funding to be allocated by commissioners 14

15. A Shared Responsibility – 2 Service staff and commissioners need to acknowledge validity of service user’ point of view Service users need to understand constraints upon planning and funding. Service users want two-way conversation with service staff during assessment and clinic appointments, as well as with managers and commissioners during planning NHS Constitution includes engagement with service users as a requirement Important that this is seen by Commissioners, Providers and service users themselves as a shared responsibility 15

16. Making Things Happen Service users and carers need communication channel to provide feedback to the service Service user involvement on Wheelchair Service Collaborative set up by the Wheelchair Service offered a way for a user group to engage Given a choice of different methods of feeding back views on the Wheelchair Service, questionnaire respondents expressed an interest in both face-to-face and virtual participation East Sussex Wheelchair Service User Group formed in February, offering opportunity for both types of involvement Membership represents all 10,000 East Sussex users and their carers, all of whom may comment and vote once registered. New group welcomed by Wheelchair Service just as Wheelchair Collaborative welcomed by wheelchair users 16

17. The Future East Sussex Wheelchair Service User Group will: hold regular user surveys on matters included as recommendations in the report and will give regular feedback raise and pursue resolution of other concerns identified during discussion but outside scope of the report and feedback to users information given by the Service LINk review and formation of new User Group means the voice of service users will continue to be heard If Commissioners included in Wheelchair Collaborative, it can be a really effective body and East Sussex Service and its users can have a brighter future despite lean times. 17