Please note - all questionnaires will remain anonymous. Contact details are only necessary if you wish to remain in contact with the Alliance in the future. This questionnaire should take about 10 minutes to complete, many of the answers are tick boxes, with spaces to make comments if you wish.

If you are the parent or carer of a person with a Neurological Condition, please fill in the questionnaire, making sure to tick the relevant parent/carer box, and then answer the rest of the questions about the neurological condition

Name

Email or other contact details

Which County do you live in?
	Pembrokeshire		Ceredigion		Carmarthenshire

Other - Please State

Do you have a neurological condition?
	Yes		No

If yes, please state which condition…

Are you a carer of someone with a neurological condition?
	Yes		No

If yes, please state which condition…

Are you the parent or guardian of a child under 18 years of age with a neurological condition?
	Yes		No

If yes, please state which condition...

Please tell us your age (or the age of the person with a neurological condition)
	0-5 years		18-25 years		46-55 years		76-85 years
	6-10 years		26-35 years		56-65 years		86-95 years
	11-17 years		36-45 years		66-75 years		Over 96 years

Health services

General Practitioner

On diagnosis how were you given the news?

On diagnosis of your neurological condition, do you feel you received adequate information?
	Yes		No

If yes - Who provided this?
	Health Professional eg. GP, Nurse, Consultant		Neurological Condition Organisation

Other... please specify

If no - Who do you feel should have provided this?
	Health Professional eg. GP, Nurse, Consultant		Neurological Condition Organisation

Other …  please specify

On diagnosis of your neurological condition, do you feel you received adequate support?
	Yes		No

If yes - Who provided this?
	Health Professional eg. GP, Nurse, Consultant		Neurological Condition Organisation

Other... please specify

If no - Who do you feel should have provided this?
	Health Professional eg. GP, Nurse, Consultant		Neurological Condition Organisation

Other...please specify

Does your GP understand all your needs relating to your neurological condition?
	Yes		No

Does your GP manage your neurological condition with regard to :-
	Yes		No
Medication/ Prescriptions
Specialist equipment

How long did it take from seeing your GP initially to seeing a specialist?
	Less than one month		One to two months		Two to three months		Three to six months

More than six months  if so, please specify…..

Specialist Neurological Support

Do you have a neurologist/neurosurgeon or specialist doctor?
	Yes		No

Where do you see them?

Do you see them on a regular basis?
	Yes		No

If so, how often...please specify...

Do you have the services of :-
	Yes		No
Specialist nurse? (Please specify in the box below)
Physiotherapist?
Occupational Therapist?
Psychologist?
Continence Nurse?
Dietician?

If yes for Specialist Nurse, please specify:

Are you satisfied with the medical services that you receive?
	Yes		No

Do you have any comments regarding your medical services?

Social Care Services

Do you, or have you, accessed social services support?
	Yes		No

If so, how long did it take from referral for you to receive social care services?
	Less than 1 week		1-2 weeks		2-4 weeks		1-2 months

More than 2 months ….please tell us how long...

What kind of support have you received? Please tick all that apply.
	Assessment of need by a Social Worker		Home care service		Direct payments
	Carers Assessment		Day services		Independent living fund

Respite care…please specify what form this takes eg. Home sitting service, short stay in residential accommodation.

Other service…please specify

Are you satisfied with the level of social care services you receive?
	Yes		No

Do you have any comments regarding your social care services?

Transport and expenses

How far is the round trip, approximately, for your neurological appointments?
	0-10 miles		10-25 miles		25-50 miles		50-100 miles

Over 100 miles ….. please tell us how far:

How do you get there? Please tick all that apply.
	Own car		Friend/neighbour		Public Transport - Bus		Public Transport - Train
	Relative/family member		Taxi		Volunteer Driver Service

Other... please specify below...

Roughly how much does it cost you to travel to your appointments?

Do you receive assistance with travel costs?
	Yes		No

Do you incur other expenses to get to appointments, such as, overnight accomodation, carer's expenses etc.?
	Yes		No

If so, what are the expenses for, eg. overnight accomodation?

On average, how much does this cost, for each trip?

Employment

Do you work?
	Yes		No

Is your employer supportive of your individual needs eg. Specialist equipment, flexible working?
	Yes		No

Any comments:

Did you have to retire on health grounds?
	Yes		No

Have you had support from any employment service?
	Yes		No

If so, what

Telemedicine Services

Some areas are setting up services where you can see a Consultant via a video-link, in order to help cut down on travel costs and waiting times. Is this a service that you would be interested in using, if it was made available to you?
	Yes		No

West Wales Neurological Alliance

We are planning to hold an event during 2010 to draw together people’s views/ experiences, which will then be submitted to Hywel Dda Health Board.

Are you interested in attending the event?
	Yes		No

If so, we will send you further information (please ensure you have filled in your contact details for us).

Would you be interested in joining the Alliance?
	Yes		No

If so, we will send you further information (please ensure you have filled in your contact details for us)

Have you any other comments or issues which you would like us to take forward to the new Health Board?

Many thanks for taking the time to complete this questionnaire. Please press the SUBMIT button below to send us your response.