Muscular Dystrophy Campaign Adaptations & Building Design Network Questionnaire
This questionnaire asks about your experience of adapting your home.
By completing it you will be providing the Muscular Dystrophy Campaign with useful evidence of the problems faced by people with muscular dystrophy, and on the effectiveness of different solutions.
You can complete the form electronically and return it by email, or print it off and return it to us by fax or post. Return details are given on the last page.
Section A. Individual details (Please tick & give more detail if necessary)
A1. Name of neuromuscular condition
Becker MD
Congenital MD
Duchenne MD
Facioscapulohumeral MD
HMSN/CMT
Limb girdle MD
Myotonic dystrophy
Spinal muscular atrophy
Other (please specify)
A2. Age group of disabled person/people
Under 5 yrs 5 -10 11 -19 21 - 30 31 - 50 51 +
A3. Were the needs of more than one disabled person involved?
Yes No
If Yes, please give details
A4. Mobility. Please tick all that apply. Are you
Able to walk?
Self-propelled wheelchair user - indoor?
Self-propelled wheelchair user - outdoor?
Powered wheelchair user (indoor?)
Powered wheelchair user (outdoor?)
Other
A5. Who owns your home?
Local Authority
Privately owned
Housing Association
Private landlord
A6. What type of property is it?
Bungalow
Terraced house
Semi-detached house
Detached house
Flat/Maisonette
Mobile home
Listed building
A7. Was your house purpose-built for your disability?
Yes No
Section B. Work carried out/outcome
B1. Approximate date the building work was completed?
B2. What work was carried out?
Ramp - front
Ramp - back
Lift
Ground-floor bathroom
Ground-floor bedroom & bathroom
Other
B3. How satisfied are you with the outcome?
Extremely satisfied
Very satisfied
Fairly satisfied
Not very satisfied
Not at all satisfied
2 QUESTIONNAIRE
B4. Would you make all the same decisions if you could start again?
Yes No
If No, what would you change?
B5. Will you need further adaptations in the future?
Yes No Don’t know
Section C. Time taken
C1. How long did it take from the time you first asked Social Services for adaptations to completion of the work?
6 months -1 year
1 - 2 years
Over 2 years. Please specify number of years
If over 2 years were there any special reasons for the delay?
C2. Was the work completed by the time you needed the special facilities?
Yes No
If No, how long did you have to manage with inadequate facilities?
Under 6 months
6 months - 1 year
1 - 2 years
Over 2 years. Please specify number of years
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Section D. Building work
D1. How did you choose your builder?
Did you get enough help with the choice?
Yes No
D2. How satisfied were you with the way your builder went about the work?
Not at all satisfied
Not very satisfied
Fairly satisfied
Very satisfied
Extremely satisfied
If not satisfied, did you feel able to complain?
Yes No
D3. How carefully did the builder follow the plans?
Extremely carefully
Very carefully
Fairly carefully
Not very carefully
Not at all carefully
Please describe any mistakes
D4. Who did you feel was responsible for making sure the builder did a good job?
D5. Was the building work supervised by an architectural designer
Yes No
If Yes, how helpful was this?
Extremely helpful
Very helpful
Fairly helpful
Not very helpful
Not at all helpful
If No, do you think it would have helped you?
Yes No
Section E. Assessment of needs/plans
E1. How well do you feel your needs were assessed?
Not at all well
Not very well
Fairly well
Very well
Extremely well
By whom? (please specify)
E2. Was an occupational therapist (OT) involved?
Yes No
E3. Did waiting for an OT assessment cause a significant delay?
Yes No
E4. To what extent do you feel your Social Services OT understood the special problems of muscular dystrophy or your type of disability?
Extremely well
Very well
Fairly well
Not very well
Not at all well
E5. Do you feel that your opinion was:-
a. asked for? Yes No By Whom?
b. listened to? Yes No By Whom?
E6. Regarding the adaptation, were you allowed to have everything you felt you needed?
Yes No
If No, please give details
E7. Who drew the plans?
E8. What did the plans cost? £ Don’t know
Section F. Support
F1. How clearly was the Grants system explained to you?
Not at all clearly
Not very clearly
Fairly clearly
Very clearly
Extremely clearly
By whom? (Please specify)
F2. How well were you kept in touch with what was going on?
Extremely well
Very well
Fairly well
Not very well
Not at all well
By whom? (Please specify)
F3. What type of grant did you receive and how much?
(Home) Improvement Grant £
Disabled Facilities Grant £
Social Services £
Family Fund Trust £
Other Charity/Trust £
Loan £
Please state terms:
None. We had to pay £
In addition to Grant we had to pay £
F4. How good was the service you received from the staff involved?
Excellent / Very Good / Good / Fair / Poor / Not involvedArchitectural designer
Builder
Social Services Community OT
Hospital / clinic OT
Local Authority Grants Officer
MDC Family Care Officer
MDC National OT Advisor
Other – see below
If other, please specify
QUESTIONNAIRE
F5. Did you find the process of adaptations was emotionally difficult?
Yes No
Please give an idea of the stress
Extremely stressful
Very stressful
Fairly stressful
Not very stressful
Not at all stressful
F6. Did you have any professional to turn to for support?
Yes No
If Yes, who?
Family Care Officer/MDC
Grants officer
Health visitor
Housing officer
MDC Branch or support group member
National OT Advisor/MDC
Occupational therapist Social Services
Occupational therapist hospital/clinic
Physiotherapist
Social worker
Teacher
Other (please specify)
In what way were they able to help?
F7. Would you have appreciated more help and advice from the Muscular Dystrophy Campaign? And in what way? (Please be honest)
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Section G. Facilities/equipment review
G1. Lift
Please tick the type of lift you have, and what you think of it
(If no lift, please continue with G2)
a) Type of lift / Poor / Fair / Good / Very good / ExcellentStairlift (seat at side of stairs)
Wheelchair platform lift up stairs
Through-floor lift
Step lift (outside)
Other – please specify below
Other lift type:
b) Can you use the lift entirely independently?
Yes No
c) If No, why not?
G2. Doors
a) Can you open & close your bedroom & bathroom doors independently?
Yes No
b) What type of doors are they?
Standard
Double swing
Sliding
Other (please specify)
c) Can you open and close either your front or back door independently?
Yes No
d) Do you have an automatic door opener?
Yes No
e) Are any thresholds a problem?
Yes No If Yes, at which door?
G3. Bathroom
a) Is your bathroom big enough for use with a wheelchair (even if you don’t use one)?
Yes No
b) Is there space for a wheelchair at the side of the toilet?
Yes No
c) Do you use a toilet chair over the toilet?
Yes No
If Yes, do you know the make or can you describe the chair?
How satisfactory is it?
Not at all satisfactory
Not very satisfactory
Fairly satisfactory
Very satisfactory
Extremely satisfactory
d) Do you have a Clos-o-mat shower toilet?
Yes No
e) or a Geberit shower toilet?
Yes No
What do you think of it?
Poor Fair Good Very good Excellent
Any other comments?
G4. Bathing
a) How do you get in and out of the bath?
I don’t have a bath
I have a shower
I can’t use a bath or shower without help
Please rate your bathing equipment below
Mermaid Ranger (with separate chassis)
Arjo Sovereign (formerly Parker Series 300 bath)
Other (please specify below)
Other equipment - type:
Any other comments?
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b) Shower
Do you have a shower?
Yes No
Please indicate type of shower
Shower over bath
Tiled floor-level shower
Shower tray. Type?
c) Type of shower chair (please describe)
What do you think of it?
Poor Fair Good Very good Excellent
G5. Washbasin
a) What type of washbasin do you use?
b) If you use a wheelchair can you get right under the basin without adjusting the footrests?
Yes No
c) Do you have space to rest your forearms?
Yes No
d) Can you reach and operate the taps?
Yes No
e) What type of taps?
Standard
Lever
Electronic
What do you think of them?
Poor Fair Good Very good Excellent
d) Can you reach your toothbrush, towel etc. without help?
Yes No
G6. Bedroom
a) Is your bedroom en suite with bathroom?
Yes No
b) Do you have space for tables or surfaces for computer/stereo/ hobbies etc?
Yes No
c) Do you use a ceiling hoist over bed?
Yes No
QUESTIONNAIRE
d) With extended track from bed to bath?
Yes No
e) Portable hoist?
Yes No If Yes please specify model
What do you think of your hoist?
Poor Fair Good Very good Excellent
Any other comments?
f) Do you have an electric bed?
Yes No
Please specify model
What do you think of it?
Poor Fair Good Very good Excellent
Any other comments?
G7. Kitchen
a) To get an idea of size, is it big enough to use from a wheelchair?
Yes No
b) If necessary, is there a kitchen surface that could be made suitable for
use from a wheelchair?
Yes No
G8. Light switches
a) If you use a wheelchair can you reach the switches?
Yes No
If No, which ones can’t you reach?
b) Can you turn the light on/off when in bed?
Yes No
G9. Heating
a) What type of central heating do you have?
None
Gas
Oil
Electric
Solid Fuel
b) Is your bedroom warm enough?
Yes No
c) Is your bathroom warm enough?
Yes No
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Section H. Involvement of Muscular Dystrophy Campaign
H1. Is your architectural designer a member of the Muscular Dystrophy Adaptations & Building Design Network?
Yes No Don’t know
Please give name
H2. Do you feel it has been a good idea to have a specialist MD architectural designer to give advice & help with all the stages involved in adaptations?
Yes No Don’t know
If Yes or No could you please give your reasons
Name and address of disabled person. (This can be omitted if you prefer)
Tel:
THANK YOU FOR YOUR HELP
Your responses will be invaluable and strictly confidential
Please return this questionnaire to:
National Occupational Therapy Advisor
Muscular Dystrophy Campaign
7-11 Prescott Place
London SW4 6BS
email:
tel: 020 7720 8055
fax: 020 7498 0670
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