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!
We are delighted to announce that our AGM and Gathering will be held at the beautiful Hilton Dunblane Hydro on 19th & 20th March 2016. We have a fantastic range of topics, wellbeing activities and entertainment from the Andy Gunn Band – all free of charge to members (and membership is free)! For more information and booking details, please see: http://haemophilia.scot/support/events/gathering-and-agm-2016/
Dan Farthing and Philip Dolan leaving a meeting with the Chief Dental Officer for Scotland at St Andrews House
We are concerned that some of our members have been facing new charges for some dental treatment since the start of the year. Last Friday (24.10.14) Dan Farthing, Haemophilia Scotland CEO and Philip Dolan, Chairman of the Scottish Infected Blood Forum and the West of Scotland Haemophilia Group met with Margie Taylor, Scotland’s Chief Dental Officer to discuss the issue.
As we have reported before, recent changes in how dentistry is structured in Scotland mean than some of our members are facing new charges for routine dentistry.
Across Scotland no-one with a bleeding disorders should be paying for dental interventions (such as extractions) which are specialist services. However, it seems as though there have been different arrangements when it comes to routine dental work.
Good oral health is extremely important for anyone with a bleeding disorder. Haemophilia Scotland’s position is that charging is a false economy as any deterioration in the oral health of people with bleeding disorders runs the risk of increasing the demand for clotting factor products in the future. Any saving could be quickly wiped out if more people need cover for tooth extractions or other dental interventions. We also believe that financial considerations should not be placed ahead of providing the best possible treatment and care.
The United Kingdom Haemophilia Doctors’ Organisation (UKHCDO) guidelines on dentistry make set out the content for these charges very well saying,
A major anxiety of patients with congenital bleeding disorders is the risk of bleeding either during or after treatment, as well as concerns about dentists’ understanding of their bleeding condition and its management.Many patients also worry when their gingivae bleed on brushing and so avoid brushing, which exacerbates the problem, especially if preventive dentistry is difficult to access in a primary care setting. A significant number of patients have also experienced the refusal of treatment by general dental practices. As a result, individuals may avoid the dentist until extensive treatment needs arise. This group of patients requires the same level of routine dental care as any other patient and good preventive practice is essential. A retrospective audit of the dental health status of 31 consecutively referred haematology patients attending a Scottish dental hospital demonstrated that untreated decay and numbers of missing teeth increase significantly with age, and delays in intervention result in extractions becoming the chosen treatment.With a few exceptions (for example, exfoliation of deciduous teeth, orthodontic extractions, removal of impacted wisdom teeth) a dental extraction should be viewed as a treatment failure.
We have taken this issue up with National Services Division (NSD) and know they are talking to the Chief Dental Officer on our behalf. In the meantime we are suggesting that everyone affected continues attending their routine dental appointments but keeps any receipts for new dental charges.
We would also like to know how many people are affected. If this issue affects you and you’d like us to keep you up to date then please fill in the short dentistry survey below.