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annex a: analysis of questionnaire

Service-user questionnaire

These findings are based on a combination of quantitative and qualitative analysis from 258 wheelchair users. This number of responses had been submitted by midday on Tuesday 9 August 2005. The following software tools were used in analysing data: SNAP survey software and Nvivo.

Section A

Question 1: How long have you used a wheelchair?

The diagram below illustrates how long respondents had used a wheelchair. There was a good spread across - 38% reporting having used a wheelchair for 1-5 years, 20% for 6-10 years, 24% for 11-20 years and 18% for over 21 years. One respondent had used a wheelchair for less than one year.

How long have you used a wheelchair?

Base: 247 - No reply 11

Question 2: When did you last get a new wheelchair?

The majority of respondents had had their wheelchairs replaced in the last 10 years. In the past year alone, 35% of respondents had had a new wheelchair so we can expect that their views of the process will be particularly fresh. A further 49% of respondents have had their wheelchairs replaced in the last 10 years.

When did you last get a new wheelchair?

Base: 238 - No reply: 20

Question 3: How long did you wait to be assessed for your wheelchair?

The diagram below examines how long users waited to be assessed for their chair. Almost half of respondents waited in excess of 6 weeks. 34% waited for between 3-6 weeks with only 20% having their assessment within 2 weeks of requesting it.

How long did you wait to be assessed?

Base: 235 - No reply: 23

Question 4: How long did you wait after your assessment until the chair arrived?

Following assessment, the waiting time for users varied significantly. As is illustrated in the graph below, 37% of users had to wait in excess of 6 weeks for their chairs to arrive. 39% of respondents had their chairs delivered within 3-6 weeks of their assessment and 23% within two weeks of assessment.

How long did you wait after your assessment until the chair arrived?

Question 5: How did having to wait for your wheelchair affect you?

The following key themes and quotes provide a flavour of the response to this question.

Themes

• The main split was between those who said that they had been affected in a detrimental way by the wait from assessment to receiving their wheelchair and those who said they had not.
• There was a 'sliding scale' of how negative the affect had been ranging from slightly inconvenient to difficult, to very negative.
• As a direct result of the waiting time, a small number of respondents had been sitting in positions/chairs that led to conditions such as scoliosis.
• Many respondents had borrowed a wheelchair from the Red Cross and this service appeared to be important to wheelchair users, covering the gaps that the wheelchair services were not covering.
• Some respondents also had either a spare, 'old', or privately bought wheelchair that they could use whilst waiting for their NHS chair.
• For those who had been in hospital, either during or after the assessment, waiting for the wheelchair did not seem to be an issue.
• Many of those who were affected by the wait said that it reduced their quality of life by making them housebound and/or bed bound.

Quotes

• My daughter had a special pushchair, then a MacLaren junior buggy, before getting a wheelchair. She developed a curvature of her spine whilst we were waiting to be assessed and eventually got the wheelchair; I was told the curvature was due to the fact that she had long since grown out of the junior MacLaren buggy and I blame the hospital for not organising something sooner; she still has curvatures on her spine.
• I could not manage to get out and about. I was housebound.
• I was not able to sit properly and was uncomfortable and in pain.
• I have muscular dystrophy and my neck muscles and sitting position was deteriorating all the time. By the time I got the chair, my head was leaning on my shoulders.
• I was unable to walk so I was bed bound and I had to do everything in bed, including the toilet.
• Very quick service, 2 days.
• My daughter's posture got progressively worse as she was in a chair that was too small for over 1 year. She ended up having to have surgery on her hip.
• Not able to go out places. Having to rely on people for my mobility needs.

Question 6: Has your wheelchair ever needed to be repaired?

From the 249 respondents that replied to this question, 65% had had their chairs repaired in the past.

Has your wheelchair ever needed to be repaired?

Base: 249 - No reply: 9

Question 7: Were you offered a replacement wheelchair while your wheelchair was being repaired?

When asked if they had been offered a replacement wheelchair for the repair period, an overwhelming majority of 88% replied that they had not. Only 18 users (22%) were offered a replacement chair.

Base: 150 - Not asked=97 (due to question 6) - No reply=11

Question 8: From the time you reported a fault with your wheelchair, how long did you wait for it to be fixed?

The waiting time for wheelchair repairs varied significantly among respondents. 61% of respondents had their wheelchairs repaired within 2 weeks of reporting the fault and 19% within 3-6 weeks, however 20% of respondents to this question had to wait in excess of 6 weeks for their chairs to be repaired and returned.

Question 9: How did having to wait that length of time for your wheelchair to be repaired affect you?

The following themes came through in analysis and are supported by a number of quotes.

Themes

• As with question 5, the main difference is between those who were adversely affected and those who were not.
• Negative experiences were largely due to long waiting times for the repair to be made.
• For those who were affected, the main issue was the lack of mobility and being housebound and/or bed bound. This in turn affected the quality of life.
• It was highlighted that some of the chairs could be used while waiting for the repair. However, at times this compromised the safety of the respondent, i.e. if the problem was relating to the wheelchair brakes.
• Some respondents carried out temporary repairs themselves or got repairs done in local garages.
• The Monday to Friday, 9-5 repair service was viewed as inadequate. Weekend cover and/or emergency cover is required.
• Those who had bought their own wheelchair were struggling with repairs, as they are not covered by the wheelchair services repair service.
• Some respondents were very satisfied with the quick service they experienced.

Quotes

• Could not go out safely.
• I could not use my chair whilst waiting for the repair to be made so I was housebound.
• Wasn't affected as my chair was repaired the next day.
• Had to wait 3 months and couldn't use the chair whilst I was waiting. This was difficult at school.
• Self repaired as a temporary measure.
• Wheelchair needed repair on the Friday before my daughter arrived home, but there is no service from 3.30pm Friday until Monday morning, an absolute disgrace.

Section B

Question 1: Who first decided you needed a wheelchair?

The individual most commonly cited in relation to this question was a hospital specialist - the main influence for 94 respondents. 77 respondents said that their GP first decided that they needed a wheelchair. 13% of respondents cited more than one individual. In addition to those mentioned above, a small number of respondents also mentioned the following influences; 'wheelchair provider/service provider', 'carer' and 'school'.

Question 2: Who assessed what kind of chair you needed?

79% said the wheelchair centre or therapist assessed the type of chair needed; technicians, hospital consultants and bioengineers were also mentioned. 6% said more than one person was involved.

Question 3: Where did the assessment first take place?

Almost two thirds (61%) of respondents' assessments took place in either the 'hospital' or the 'wheelchair centre'. 55 respondents had their assessment at 'home', 12 in the medical centre and9 in 'school'. 6 respondents had their assessment in two locations.

Question 4: Do you feel the assessment covered all of the areas it needed to?

71% of respondents felt that the assessment covered all of the areas it needed to, while the remaining 29% did not.

Question 5: If you answered 'NO' to the question above, can you describe what else it should have included?

Themes

• Respondents felt that they were not being listened to during the assessment.
• The assessment model should move towards a more holistic approach.
• The model lacks the flexibility that is required when assessing different people with different needs.
• The majority of respondents would like the following people to be involved in the assessment:

- carers
- family, and
- physiotherapist.

• The majority of respondents would like the assessment to take into account:

- carers abilities
- type of car used
- social life
- medical condition
- best clinical seating posture
- lifestyle
- accommodation
- entry and exit barriers
- neck/back support/extension
- progression of disability, and
- future development needs.

Quotes

• Totally ignored medical condition! Social needs didn't even come into it.
• Not very good at looking at the whole person; me in my normal environment or good seating posture for me.
• The doctor did not take into account the family lifestyle and how the type of wheelchair would impact on my son's life. Nor did he ask what vehicle we had and if the wheelchair would fit.
• Not sure it was the most suitable chair I could have got.
• Was firstly told that one chair fits all and if we needed a chair we could push and see over, we would have to compromise my child's sitting position. We argued and said that we would not do this and asked if there was a chair that tilted low, and lo behold there was.

Section C

Question 1: Are you satisfied with the wheelchair you have now?

245 respondents replied to this question, of these, 59% reported that they were satisfied with the wheelchair they have now. The remaining 41% were not. The following graph illustrates reasons for dissatisfaction that were provided by users.

What way are you not satisfied with the wheelchair?

Base: 101 - No reply: 0

Question 2: If you answered 'NO' to the above question, can you describe in what way you are not satisfied with your wheelchair?

The most frequently cited reason for users not being satisfied was that their wheelchair was 'uncomfortable' (27% of respondents). The majority of users who reported that their wheelchair was uncomfortable were in the following age brackets: 17-45 (12 users) and 40-65 (11 users).

A similar number of users reported that 'poor fit/too small/too big' was the reason for their dissatisfaction. In total 26 respondents were unhappy with the fit of their chair, more than half of these respondents were in the 17-45 age group, with four aged under 16 and the remainder between 66-88.

'Mobility' was also a relatively big issue (this was mentioned by 21% of dissatisfied users). 22 users reported that they experienced difficulty with poor mobility. To provide a break down by age of respondents: nine were aged between 46-65, five between 17-45, four were under 16, three were between 66-80 and one was over 80.

Ten respondents were unhappy with the appearance of their wheelchairs. We expected that these respondents would tend to be younger users, however, analysis of data revealed that there is a spread across age groups. Four of those unhappy with appearance fell into the 17-45 age group, a further four were between 46-65, the final two were aged 80+.

A small number of respondents reported other reasons for their dissatisfaction, these included: 'noisy', 'provided with refurbished chair' and 'no review systems/poor review system'.

Question 3: Do you/your carer find your wheelchair easy to use?

72% of respondents reported that they, and/or their carer found their wheelchairs easy to use. Of the 69 respondents who had difficulty in using their chairs, 62% were aged between 46-80. Eight users under the age of 16 reported having difficulties using their chairs and a further 18 users aged between 17-45. No-one aged 80 or over reported any problems in this area.

Question 4: If you answered 'NO' to the above question, can you describe the difficulties you/your carer have using the wheelchair?

Themes

• The majority of respondents found the wheelchairs heavy and difficult to handle and fit in the boot of cars - this was an issue for all age groups.
• Many respondents identified the handles as a particular issue. They were often too high for the user, too low for the carer and generally difficult - this was an issue for all age groups.
• The general weight of the chair was a particular issue for the age group 46-61.
• It was highlighted that the wheelchairs were generally difficult to push and manoeuvre. The reasons given included:

- wheels
- control functions
- stability, and
- weight distribution to avoid tilting.

Quotes

• Too heavy, too cumbersome; does not dismantle sufficiently for storage in car.
• Handle bars too low for carer.
• Difficult to manoeuvre, particularly indoors on carpets.
• The only suitable place for the chair is a museum. It is prehistoric.
• The wheels on my manual wheelchair are small so it's hard to push up and down kerbs.
• It is old, rusty, heavy, falling apart and far, far too big for a small child.

Note: The vast majority of issues were the same for all age groups.

Question 5: Have you ever been refused a piece of equipment that you felt you needed?

25% of respondents reported that they had been refused a piece of equipment in the past. (247 users responded to this question in total.)

The most frequently cited piece of equipment refused was a 'power chair/electric wheelchair' this was mentioned by 31% of respondents to this question. 21% of respondents were refused 'wheelchair accessories' and 16% were refused 'different chairs', e.g. moulded, recline etc. A small number of respondents reported that they were refused the following: 'lighter chair' and 'financial help'.

Section D

Question 1: Apart from being assessed for your wheelchair, have you ever had contact with the wheelchair service?

Outside of the wheelchair assessment process, 58% of respondents had contacted the wheelchair service.

Question 2: If you answered 'YES' to the above question, can you tell us when and why you have been in touch with the service?

Of the 107 respondents who reported having contact with the wheelchair service (aside from assessment), 42% have had their wheelchairs replaced in the last year and 44% of respondents have had a replacement between the last 2-10 years.

Question 3: Did you find it easy to contact the person you needed to speak to in the service?

79% of those who had contacted the service relating to issues other than assessment found it easy to make contact with person they needed to speak with. (Base 140, No reply 5)

Question 4: If you answered 'NO' to the above question, can you describe the difficulty you experienced contacting the person you needed to speak to?

Themes

• It was repeated that it is difficult to get through on phone lines.
• A number of respondents also said that they did not even have the number of their wheelchair service and had to go through someone else, i.e.OT.
• It was common that respondents did not have their phone calls or letters responded to, despite leaving several messages.
• It was felt that those answering the phone calls knew too little about wheelchairs and wheelchair user issues.
• Many suggested that there appeared to be a lack of communication within the service itself and that this was one potential reason why phone calls were not returned.
• A number of respondents had been passed from 'pillar to post' without reaching the appropriate person for their query.

Quotes

• I was told I had to put my query in writing.
• Continuous phone calls but unable to reach the required person
• Can't get through.
• Left lots of messages but no-one phoned back for over 3 weeks.
• They said the people I needed to contact didn't carry a phone.

Question 5: If you needed an appointment, how long did you wait for one?

Respondents requiring an appointment with the wheelchair service for issues other than assessment, experienced various waiting times. 63% of respondents to this question had to wait longer than 14 days for an appointment. 37% of respondents were provided with an appointment within 14 days of requesting one.

Question 6: How did waiting for an appointment affect you?

Waiting for an appointment had various implications for wheelchair users, a number of key themes emerged during analysis and are provided below.

Themes

• For those waiting between 0-7 days, the majority of respondents reported no major detrimental affects.
• For those waiting 14+ days, the vast majority of respondents said that it had quite serious negative affects.
• The most common negative affect of waiting for an appointment were:

- being house/bed bound
- inconvenience
- safety risks
- discomfort, and
- pain.

• Most respondents could not understand why getting an appointment was so difficult.
• Many said that they had been passed from person to person when trying to get an appointment.

The following are a selection of quotes provided by users who had to wait on appointments:

Quotes

• I could not take my wife out of the house.
• Managed to keep myself busy without the proper use of my chair, but after some time I couldn't keep my impatience any longer.
• Physically it hurts my body, mentally it is stressful and very depressing, and my condition gets worse.
• Several letter of complaints to NHS Chief Executives and local MP/ MSP.
• Dissatisfied with the service and constant excuse of why I cannot get appointments and repairs.

Question 7: Did you get an appointment that suited you/your carer?

82% of wheelchair users who requested an appointment were provided with an appointment that suited them and/or their carers. 31 respondents did not provide an answer to this question.

Question 8: If you answered 'NO' to the above question, please give details.

(none given)

Question 9: When you contact the wheelchair service, do you always get enough information? (Question 10: If 'NO', please explain; Question 11: Is the information you get always easy to understand?; Question 12: If 'NO' how could it be made easier?)

• 70% of those who contacted the wheelchair service, for issues other than assessment, said that they always got enough information.
• 82% of users who contacted the service felt that the information was easy to understand.

Question 13: Has anyone from the wheelchair service ever contacted you?

58% of respondents to question 27 had been contacted by the wheelchair service.

Question 14: If you answered 'YES' to the above question please give details.

Reasons for contact from the service are listed in the graph below. The most frequently cited reason for contact was regarding 'repairs/faults' (cited by 28% of respondents who had been contacted by the service). 23% of respondents to this question cited 'appointment' as the reason for contact. Other reasons for contact reported by a small number of respondents were; 'customer satisfaction/quality control' and 'user group meetings'.

Reason for contact from wheelchair service

Section E

Question 1: Do you think the wheelchair service could improve?

68% of respondents believe that the wheelchair service could improve.
Of the 75 respondents who felt that that no improvements were necessary, 56% were aged between 16-65, with the remainder aged 65+.

Do you think the wheelchair service could improve?

Base: 231 - No reply; 27

Question 2: If you answered 'YES' to the above question, please give details of how you think it could improve.

A high percentage of respondents felt that the service could improve and provided a wide range of suggestions. The following are some of the key themes, which emerged in analysis.

Themes

• Repair:

- local repairs
- quicker repairs
- annual or 6 monthly service like an MOT
- weekend breakdown cover, and
- include privately bought wheelchairs.

• Communication:

- respond to letters and phone calls
- increased and improved information provision
- easier to get hold of, and
- open 7 days per week.

• Staff:

- nicer
- more knowledgeable, and
- increased training.

• Assessment:

- holistic approach (lifestyle/family/carer/etc)
- redefine eligibility criteria
- flexible criteria
- home visits, and
- automatic follow-up and review after receiving equipment.

• Choice:

- different chairs
- wheels
- fittings
- new technologies
- comfort, and
- options for powered and manual chairs.

• Other:

- more funding
- suit service to user - not the other way around
- improved access to appointments
- reduced waiting times
- seamless referrals
- local service, and
- voucher system.

The following are a selection of quotes from respondents regarding potential improvements to the service.

Quotes

• I think they should hold clinics outwith Aberdeen, as it is difficult and time consuming having to travel to Aberdeen (a busy city) when a lot of the assessments can be carried out at clinics nearer the wheelchair user's home.
• Regular 6-monthly service checks of all chairs used by full-time users.
• Need to take account of whole lifestyle/circumstances when assessing wheelchair needs.
• More staff and more money.
• Adopt a customer driven culture. It is a 'service'. Embrace social inclusion and move away from prescriptions on medical need. Recognise lifestyle. Adopt a culture of 'get it right the first time'.

Section F

Question 1: What age are you?

We have had a good response rate across all ages. A broad age group responded, with particularly high number of responses from 46-65 year olds.

What age are you?

Base: 255 - No reply: 3

Questions 2 and 3: What is your postcode, which wheelchair service do you use?

Table 1 Wheelchair Services

Base: 242 - No reply: 16

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