Category Archives: Rare Conditions

Glasgow Royal Infirmary write to bleeding disorders patients about the plan to move the Haemophilia Unit

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Melanie McColgan, Specialist Oncology Services & Clinical Haematology General Manager with NHS Greater Glasgow and Clyde (NHSGGC), has written to all patients registered with the Haemophilia Unit at the Glasgow Royal Infirmary (GRI) about the proposal to move the Unit.

Read the GRI letter to patients

The key points of the letter are,

  • They are proposing to move the Haemophilia Unit so that a new discharge hub can be built.
  • The Haemophilia Unit will stay on the GRI site.
  • The proposed new accomodation is the first floor of the St Mungo building which is located off the link corridor behind the area occupied by Plastic Surgery. The area is accessible via a lift.
  • The nearest access point to the St Mungo building is via Castle Street, or via vehicle access from Wishart Street where there are disabled parking spaces. They have agreed that additional disabled parking will be provided in the area directly behind the St Mungo building and that these spaces will be for patients accessing services within the St Mungo building.
  • They recognise that the new location may not be considered as easily accessible as the present unit.
  • They are committed to work with a small patient group to remove accessibility obstacles presented by the new location.
  • They have no timescale for any move taking place, but undertake to keep patients and staff advised of developments.

The letter advises patient that The Haemophilia Society West of Scotland Group is holding a meeting for patients on,

Saturday, 23rd June at 11am
The Boardroom
Ground Floor, Glasgow Royal Infirmary

Management and clinicians from the Haemophilia Unit have been asked to attend to talk about the rationale for the move and discuss the detailed plans. If you wish to attend this meeting, please e-mail John Prior, Secretary of The Haemophilia Society West of Scotland Group at prior-john2@sky.com or text him on 07876 592 087.

Haemophilia Scotland are not currently taking part in the process.  We have written to the Cabinet Secretary for Health and Sport, Shona Robison MSP, to object to NHSGGC taking the decision to move the Haemophilia Unit without consulting patients.  We have asked the Scottish Government to call-in the decision and to trigger a full consultation so that all patients can express their views.  We think it is a fundamental principle that no changes which affect people with bleeding disorders are made without involving them at all stages – “nothing about us, without us.”   Until we hear back from the Scottish Government we don’t think it is appropriate for us to engage with the NHSGGC process which it is restricted to communications, engagement, and access issues.

Read our letter to Shona Robison MSP

Visit to the Rare Books Collection at St Andrews

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On February 5, a few of us visited the University of St Andrews’ Rare Book Collection to see how women’s issues are portrayed in historical texts. Thinking ahead to the Women’s Booth at Congress in May, a lot of attention and focus will be on the present and the future, so the purpose of this visit was to encapsulate the past with the present and future,

providing one holistic overview.

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The University of St Andrews is the oldest of the four ancient universities of Scotland and the third oldest in the English-speaking world. Founded in 1413, we were fortunate to have the opportunity to pore over books from as far back as the 1500s.

In doing so, we were able to see how women’s issues were portrayed in historical texts, which highlighted how far medicine and technology has advanced since then, leaving us optimistic about the progression of modern medicine.

We all thought the visit was worthwhile and we share our thoughts on the visit below.

 

1

The incredible level of detail. Note that the veins look like branches – Inspiration for the centrepiece for the Quilt Project.

Joan: Joan was intrigued with the sharp detail of the drawings. MRI scanners and the like are recent inventions that provide us with images of the interior of the human body. Historically, any research on the human body was done post mortem and an artist would illustrate the findings.

S4

Susan was interested in the forceps illustration.

Susan: I was interested in the lift the flap illustration in the text book dated 1830. Basically, the illustration showed how to use forceps.  I had been very sick for 2 days before my son was born early at 38 weeks. My GP had the forceps ready as he thought I was too weak to deliver the baby alone. I had a great fear of anything like that and luckily my son was born without them. 4 months later he was diagnosed with severe haemophilia A, and I was diagnosed at the same time as having low factor levels.  Lucky for us both! Later, my GP remarked at how relieved he was about not damaging my son with using the forceps.  I added for me too – a reminder that childbirth is risky too for carrier mother.

3

Alex R was impressed with the printing

Alex R: Alex was really intrigued with how the illustrations were printed and was cleverly able to distinguish the difference between the laborious manual printing process of the 1500s to the machine printing of the 1800s.

 

S6

Alex W: The book that stood out the most to me was a book from the 1500s that had illustrations of babies (with a full set of hair!) in the womb. There was one image in particular, of twins, that resonated with me because I know how complicated a multiple birth pregnancy can be. My mother gave birth to triplets, and without modern medicine, would most likely not have survived. I felt a bit sombre thinking about the risk that pregnancy carries but grateful for the advances in medicine.

We came away from the visit with insight into how women’s issues were portrayed in historical texts, and with a deeper and more comprehensive understanding of how the issues of the past, present and future are all interlinked.

What research question would do most to #StopTheBleeding?

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Stop the bleeding

A Bleeding Disorders priority setting partnership (PSP) has been formed in conjunction with The James Lind Alliance and they are asking for your help.

The PSP is compiling a list of the 10 most important unanswered questions about bleeding disorders.  Once finished, the list will be used to promote research and attract funding.  It’s is very important that research goes into areas which have an impact on the lives of individuals and families with inherited bleeding disorders.  That is why the PSP want to encourage those who live with the conditions to feed in their ideas and propose research questions.

All you need to do to take part is complete a short online survey.

Stop The Bleeding Survey

The JLA is a non-profit making initiative which is a branch of the National Institute for Health Research (NIHR). The experience of the JLA with conducting PSPs is helping us shape and organise this project. You can find details about the JLA and other PSPs here.

Haemophilia Scotland is not a member of the PSP Steering Group but we are supportive of their objectives.

Read the Scottish Needs Assessment Report

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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,

  1. Reducing the number of bleeds
  2. Finding a cure
  3. 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

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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.

Are you ready for #RareDiseasesDay 2017?

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It’s just 29 days until Rare Diseases Day 2017!  Rare Diseases Day is always on the last day of February, which this year is the 28th.

Here at Haemophilia Scotland we are great supporters of Rare Diseases Day.  A disease is considered rare when it effects less than 1 in 2,000 people.  That means even the most common bleeding disorders, such as Haemophilia A or B and von Willebrand’s Disease, are rare diseases.  Many of the inherited bleeding disorders are ultra rare and effect very few people in Scotland.

Rare Diseases Day gives us all a chance to come together with people affected by other conditions to point out that 1 in 17 people has a rare disease or condition at some point in their life.  So, when we you look at the big picture, having a rare disease isn’t that unusual at all.

One great way you can use Rare Diseases Day 2017 is to take part in the Rare Diseases UK  Instagram 28 day photo challenge!

How to get involved

  1. Follow @rarediseaseuk on Instagram.
  2. Take a photo  every day from 1-28 February based on the themes provided below. Alternatively you can just get involved on the days that suit you!
  3. Post your photo to Instagram, using the hashtag #RareDiseaseDay.
  4. Tag @rarediseaseuk in your post so we can re-post photos.
  5. Keep an eye on our Instagram,  Facebook and Twitter pages to see what other people are posting.

If you can’t manage every day, feel free to participate on the days that most appeal to you. there will be prizes for the best photos and most committed participants so good luck!

Help get #RareDiseaseDay trending and start a conversation about rare diseases!

 

 

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Last chance to have your say in our #NeedsAssessment

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Fitbit-Alta-Fitbit-Blaze

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!

Click here to take the survey

Official Rare Diseases Day Video Launched

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Every year, at the end of February, Haemophilia Scotland joins other patient groups around the world to mark Rare Diseases Day.

A rare disease is any condition which affects less than 0.1% of the population – that is 5 or fewer people in every 10,000 people.  All the bleeding disorders which affect our members are rare conditions.

There are thousands of recognized rare diseases, with more being identified every year. Research shows that 1 in 17 people will suffer from a rare disease at some point in their life.  So each condition maybe rare on its own but together rare diseases affect a lot of patients and deserve a higher profile.

Rare Diseases Day is the last day in February every year.

Rare Diseases Day Event Success

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The Garden Lobby of the Scottish Parliament was packed for the 2015 Rare Diseases Day Scottish Parliament Reception.

The Garden Lobby of the Scottish Parliament was packed for the 2015 Rare Diseases Day Scottish Parliament Reception.

Susan, Carolyn and Dan attended an excellent Rare Diseases Day Reception in the Scottish Parliament last night. The Garden Lobby was packed with MSPs, patients, carers, and healthcare professionals.  Lots of patient organisations like ours were there and displaying posters about their work.  The event was also well attended by representatives from both the Scottish Government and pharmaceutical companies who make products fro rare diseases.

A condition is classed are rare if less than 1 in every 2,000 people are effected.  That means that all bleeding disorders are rare.  There are up to 8,000 identified rare conditions with more being identified all the time.  The Genetic Alliance estimates that there are 300,000 people with a rare condition in Scotland.

The Scottish Government has signed up to a single, UK-wide, Rare Diseases Strategy and has an implementation plan which sets out what that will mean in Scotland.  There is also an oversight group to make sure that the plan leads to real changes on the ground.

Shona Robison MSP, Cabinet Secretary for Health, Wellbeing and Sport, told the event about her view of the need for patients to have good information and support.  She also highlighted the importance of patient groups to the work of the Scottish Medicines Consortium.

Just two weeks until Rare Diseases Day

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Are you ready for Rare Diseases Day?

Just in case you needed a reminder of what it is all about a new video has been released.

If you are inspired to get involved then you can Raise & Join Hands for Rare Diseases Day.  Everyone is been asked to upload photos of themselves raising and joining hands to symbolise people with all sorts of conditions from all over the work coming together to raise awareness of rare diseases.

If you can get to Edinburgh on the evening of the 24th Feb then there are still tickets left for the Rare Diseases Day Reception at the Scottish Parliament.  The event is free and is in the prestigious Garden Lobby.  However, you’ll have to hurray, the organisers are asking for everyone to register before the end of Feb 17th.  As we write that is less than 24hrs!

Talking to the Association of British Pharmaceutical Industries (ABPI)

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The Association of British Insurers

The Association of British Insurers

The ABPI regulate how groups like our can work with pharmaceutical companies like those which make clotting products. Today (03.12.14) we attended an event they ran with The ALLIANCE Scotland which explored some of the issues that come up when we all work together.

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