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Access to specialist counselling service via RareMinds

Introduction

Rareminds is the first specialist, non profit, rare disease counselling and psychotherapy service in the UK (and possibly globally). Their team has been providing online counselling and wellbeing services for rare disease charities since 2014. Rett UK is considering partnering with them to give families access to this specialist counselling. We believe it is a gap in our services. Whilst our team at Rett UK can provide emotional support we are not trained counsellors. If families agree this would be a beneficial service we would seek funding to support it so it is free to access for all our families who need it. The survey should take less than 5 minutes to complete and is anonymous. Thanks.
1.Has your son/daughter being diagnosed with Rett syndrome negatively impacted your mental health? Note - this could also be answered retrospectively - so thinking back to the time of diagnosis if it was a while ago.(Required.)
2.Has parenting or caring for someone with Rett syndrome negatively affected your mental health?(Required.)
3.If you answered yes to question 2, please can you say if it has affected your mental health in the past or if it is a current issue? You can select both if it has been an issue and is at the moment.
4.Have you ever been asked about your mental health by your specialist health/social care professionals?(Required.)
5.Would you like healthcare professionals to be more aware of the mental health impact of caring for someone with Rett syndrome?(Required.)
6.Have you ever been offered or sign-posted to any mental health support services with respect to parenting or caring for someone with Rett syndrome e.g. counselling/psychotherapy, psychology, peer support?(Required.)
7.To what extent has your son/daughter being diagnosed with Rett syndrome and the subsequent parenting or caring for someone with Rett syndrome had a negative impact on your family relationships?(Required.)
8.To what extent has your son/daughter being diagnosed with Rett syndrome and the subsequent parenting or caring for someone with Rett syndrome had a positive impact on your family relationships?(Required.)
9.Are you still in a relationship with the father or mother of your child with Rett syndrome?(Required.)
10.If you answered 'yes' to question 9, to what extent does parenting or caring for someone with Rett syndrome affect the quality of your relationship with them?
11.If you answered 'no' to question 9, to what extent was your son/daughter being diagnosed with Rett syndrome and subsequently parenting and caring for them responsible for the breakdown of that relationship?
12.Please can you rate from 1 - 10 which are the most challenging aspects for you in parenting or caring for someone with Rett syndrome, with 1 being the least challenging and 10 being the most challenging?
1
2
3
4
5
6
7
8
9
10
Mental fatigue
Physical fatigue
Worries about their health
Worries about their future
Getting the right support from statutory services e.g. education, health and social care
Financial worries
Feelings of guilt due to the impact on siblings (if no siblings please leave this row)
Low mood
Relationship worries
Accessing and managing associated financial benefits e.g. DLA. PIP, Universal Credit
Managing own self care
13.Please describe any additional ways in which parenting or caring for someone with Rett syndrome impacts your mental health.
14.If the demand is there and Rett UK can source the funding to provide this service please can you say which of the following would be most helpful to you (you can select one or more than one choice)
15.Would you like Rett UK to provide more general support (not specialised counselling services) for mental health and well-being through its activities?(Required.)
Many thanks for taking the time to complete the survey.

If completion of this survey has raised any issues for you about your mental health, please speak to your GP or specialist mental health team or Julie Benson at Rett UK on 01582 798911.

Further help is also available at:

NHS Every Mind Matters https://www.nhs.uk/every-mind-matters/
Samaritans www.samaritans.org