In the run up to our AGM this Saturday we wanted to publish the final report of the Needs Assessment we conducted in partnership with the Scottish Inherited Bleeding Disorders Network. We are grateful to The Lines Between who independently carried out the assessment. Thank you to everyone who took part by completing the survey to have their say.
There report highlighted that there is unmet demand for physiotherapy and psychosocial services. The services already offered in these fields are greatly appreciated but more provision is need. Some of the other key findings from the report were,
- Some people with less severe bleeding disorders suffer anxiety about how to manage their condition.
- Over half of people have additional social, emotional, or practical support needs.
- People are experiencing stigma and discrimination at work.
- While it is understood that activity is important, activity levels are low.
- People wanted more local and specific support services.
The top three priorities for the future were,
- Reducing the number of bleeds
- Finding a cure
- Reducing the frequency of infusions
Read the Report
You can download a copy here or by signing up for a free account on Issuu.
We formally launched the report on the 15th of March and then presented it to MSPs, patients, and healthcare professionals at a reception at the Scottish Parliament.
Photos from the Scottish Parliament Reception
Photos courtesy of Elspeth Parsons of The Lines Between.
We are grateful to Baxalta (a Shire company) for the unrestricted grant which made the Scottish Needs Assessment possible.
We are closing the needs assessment survey on Thursday morning (1st December). We’ve had a really good response so far but the more people who take part the more useful our results will be. We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.
There are some parts of Scotland that are a little under-represented at the moment. We are keen that the results reflect everyone in Scotland. So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.
If you do take part then you might also win one of three FitBits that we are giving away. They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!
The Department of Work and Pensions (DWP) of the UK Government has launched a call for evidence for a review it is conducting into the Personal Independence Payment, known as PIP. Some members have told us that they have had problems with this benefit so we think it is important that people with bleeding disorders take part in the review. This is one of the benefits which will be becoming the responsibility of the Scottish Government so it is important we have a good understanding of it’s weaknesses so we can lobby both Governments for improvements.
The DWP want to hear from both organisations and individuals who have information about how all aspects of the PIP process and assessment are operating. If you would like to make your own submission the deadline is 5pm on the 16th September 2016. You may find it quicker and simpler to complete our short survey which we will use to inform our submission.
On a related topic, we believe that many people with bleeding disorders in Scotland are not claiming all the benefits they are entitled to. Although many of the Haemophilia Centres can refer people for benefits advice already, we are looking at ways to make advice easier to access and more closely related to bleeding disorders. If you’d be interested in being kept informed about this please complete the contact form below.