Hypermobility Syndromes Project

You are being invited to take part in a project looking at the health and social care experiences of adults with hypermobility syndromes living in Yorkshire and the Humber.

This study is a joint project by all the Healthwatch organisations across Yorkshire and the Humber. Healthwatch Calderdale is leading the project.

What is the project’s purpose?

The purpose of the project is to collect the voices of adults with hypermobility syndromes in Yorkshire and the Humber in order to develop an understanding of your health and social care experiences. We will report on these experiences, sharing our understanding with commissioners and service providers so that they have a clearer picture of the health and social care experiences of adults with hypermobility syndromes. We hope to interact with commissioners and service providers to work towards addressing the service issues identified.

How do I take part?

By agreeing to take part in this study, we ask that you complete the following survey:

https://www.surveymonkey.co.uk/r/hypermobility

The information we would like you to provide has been arranged as either items for you tick, to select from a drop down menu or for you to provide information in your own words.

There are five headings:

Clinical background – about your symptoms and diagnosis
Your experience of getting a diagnosis
Your NHS experience
Your social care experience
What worked well in your health/social care experience and what would make the experience better
There is also an opportunity for you to tell us anything else that you feel is relevant to your experience of your condition.

If you would find it easier to provide the information to someone in a telephone interview, please get in touch with your local Yorkshire/Humber Healthwatch:

Healthwatch Barnsley: 01226 320106

Healthwatch Bradford: 0300 56 10 987 or 01535 665 258

Healthwatch Calderdale: 01422 399433

Healthwatch Doncaster: 0808 8010 391

Healthwatch East Riding of Yorkshire: 01482 334 999 or 01482 665 684

Healthwatch Kingston upon Hull: 01482 499038

Healthwatch Kirklees: 01924 450379

Healthwatch Leeds: 0113 898 0035

Healthwatch North Lincolnshire: 01724 844986

Healthwatch North East Lincolnshire: 01472 361 459

Healthwatch North Yorkshire: 01904 683802

Healthwatch Rotherham: 01709 717130

Healthwatch Sheffield: 0114 253 6688

Healthwatch Wakefield: 01924 787 379

Healthwatch York: 01904 621133

If you have any questions about the project, please contact Karen Huntley via email at: karen.huntley@healthwatchcalderdale.co.uk

Will the information I provide for the project be kept confidential?

All the information collected from the questionnaire about you for this project will be kept strictly confidential. What you say will be reported anonymously with any identifying personal data removed to ensure your confidentiality.

We are asking for the first part of your postcode (e.g. HX3; WF12) so that we can analyse the project results by local Healthwatch as well as collectively throughout Yorkshire and the Humber. You will be asked if you wish to supply your name, email address and telephone number. These will only be used to contact you if you indicate that you wish to be kept informed of the project’s progress or that you are willing to be contacted to provide further information.

What is Healthwatch?

Healthwatch is the independent champion for people who use health and social care services. We operate at a local level as independent organisations (e.g. Healthwatch Calderdale, Healthwatch Kirklees) as well as at a national level as Healthwatch England. There is a local Healthwatch for every local authority area. These form a network of 153 organisations.

Local Healthwatch listen to what people like about services and what could be improved. We share people’s views with those with the power to make change happen. We also share them with Healthwatch England, so that it can identify issues affecting people across the country and help improve the quality of services. People can also speak to local Healthwatch find information about health and social care services available locally.

Our sole purpose is to help make care better for people.

In summary – Local Healthwatch is here to:

• help people find out about local health and social care services
• listen to what people think of services
• help improve the quality of services by letting those running services and the government know what people want from care
• encourage people running services to involve people in changes to care