Join us on 20th November at Crieff Hydro to ‘try something new’!
We would love to see you at our upcoming day out! A range of free activities will be on offer for all ages, so if you have always had a wild desire to try laser quest in the woods, learn bush craft skills, be treated to a heavy leg reviver or aching foot massage, or body polish, then this is for you! There will also be an opportunity to go swimming or try the steam room, jacuzzi or gym. We will also have a space where you can just relax and catch up with other members. Crèche facilities will be available and the hotel is fully accessible, more details follow below.
We will be starting off with lunch from 12:30-1:30 in the Ferntower Suite. All activities, treatments, lunch and crèche facilities are free of charge and we can reimburse travel costs.
Lunch & Hub
A buffet lunch will be available from 12:30-1:30pm in the Ferntower Suite, so you can arrive any time in between then to eat with us. If you have any dietary requirements, please let us know. We will have the Ferntower Suite from 12-5pm, so you can relax, meet up or take a break here at any time. The room has a conservatory and bar area, with cloakroom facilities. There is a patio area opposite too, just in case we are lucky with the weather! At the hub, you will be able to find out more about Pfizer’s Miles for Haemophilia campaign.
Mixed activities will run from 1:30 – 4:30pm. There will be an opportunity to try the climbing wall and zip wire, bush craft skills then a game of woodland combat (paint ball without the pain, laser tag in the woods!). You can join in all the activities or choose your favourites. Our activities can be adapted to be indoor if the weather gets bad!
If you would like to try a spa treatment, you can chose from Aching Foot Reviver, Heavy Leg Reviver, Bespoke Body Polish, Perfect Back Massage or Intensely Nourishing Hair Treatment. Each treatment lasts 25mins and needs to be booked in advance.
Lagoon Leisure is a great place for kids and adults. There is a shallow pool for the wee ones, and a heated 20 metre pool. The day tickets allow you access to main swimming pool, and the sauna, steam room, jacuzzi and gym. All areas are accessible, there is wheelchair access to the facilities and an electric chair to the main pool.
For under 2’s there will be crèche sessions from 1:30 – 3:00pm and 3:00 – 4:30pm. For 2-12s there is a continual crèche service from 1:30-4:30pm. Places need to be booked in advance.
The hotel and leisure facilities are fully accessible. All restaurant and dining areas are spacious and offer good manoeuvrability. Wheelchair users can get to all areas in the hotel via the lifts, and there are specifically-adapted toilet facilities near each area. If you have any questions about accessibility, just get in touch and we will get an answer for you.
How to get there:
A map of how to get to Crieff Hydro can be found here:
If you are arriving by public transport, we can arrange a taxi for you. We will be leaving from Haymarket Station and arriving at Perth Station, so let us know if you would like to travel up on the train or meet us at the station and get a taxi to Crieff Hydro. We can reimburse travel costs.
If you have any questions or would like to book, please contact Emma email@example.com or 0131 281 0857
This event is supported by an unrestricted grant from Pfizer
Bupa Home Healthcare is the company responsible for delivery clotting factor products to people in Scotland. In July was bought by Celesio UK who also own Lloyds Pharmacy. As a result their name has changed today to LloydsPharmacy Clinical Homecare.
The company is the same legal entity. This means that the contracts they hold with NHS Scotland will not be amended. They will continue to be contracted to deliver the same service to people with bleeding disorders. There is also no difference in how the service is delivered so you will continue to speak to the same people on the same phone numbers.
As well as starting to see the new name, logo, and branding on materials connect to your home delivery there will be changes to emails. Bupa Home Healthcare email addresses will start changing over from today. If you send them an email it will still be delivered but you will be notified of what their new email address has changed to so that you can update your records. The email addresses that end “nhs.net” have not changed yet.
Everyone on home delivery should have received a letter from the company explaining these changes already. You should also have a copy of their new patient guide, which you can view here on their new website LPclinicalhomecare.co.uk
Thank you to all our intrepid climbers who braved the walls at Transition Extreme! It was a great afternoon in brilliant company. Despite many being first time climbers, impressive heights were reached by all. We loved being up north with members from all over Scotland. Special thanks go to the Aberdeen Group and Centre staff for their support.
We hope to announce details of our next activity day very soon. Our next event is going to see the fantastic Andy Gunn Band at Eden Court on 4th November – please get in touch if you would like tickets or more details!
The lone recommendation of the Penrose Inquiry final report was that Hepatitis C testing should be offered to individuals who may have been exposed to Hepatitis C via blood or blood products before September 1991, who have not already been tested.
Our CEO, Dan Farthing-Sykes, served on a Short-Life Working Group, commissioned by Scottish Government which estimated the numbers of living undiagnosed people and recommend any further action that should be taken to try to identify them. In its report, the Short-Life Working Group recommended a targeted awareness campaign to encourage those who may have had a blood transfusion before September 1991 to come forward for testing. It is estimated that 32 people who received a blood transfusion in Scotland before September 1991 were infected with Hepatitis C and are still alive and have not yet been tested.
A public information notice was launched today (10th of October) to encourage the undiagnosed group to come forward for advice and testing if they have not done so already. Around 400,000 posters and leaflets are being distributed to GP surgeries, hospitals, care homes, pharmacies and other community buildings across Scotland. The Chief Medical Officer Dr Catherine Calderwood has also sent a letter to clinicians to remind them of the need to offer Hepatitis C tests to certain at-risk groups. A different approach is being developed to trace any potential cases of people with bleeding disorders.
Anyone who knows, or suspects they may have received a blood transfusion before 1 September 1991, and thinks they might be at risk, should call the Hepatitis helpline on 0800 22 44 88 or speak to their GP practice.
Health Secretary Shona Robison said:
The working group which we established to look into this estimated that the number of people infected with Hepatitis C via transfusion who have still not been diagnosed will be very small. However, it is possible there may be some people with mild symptoms who are living with this illness and don’t know it. There have been efforts to trace them in the past, but we want to make sure that everything possible is done to find those still undiagnosed.
The good news is that treatments for Hepatitis C have advanced enormously in recent years, so it really is vital that people come forward.
The Scottish Government is absolutely committed to do all we can to help the people affected by this terrible chapter in the history of our health service. We remain the only country in the UK to have held a full public inquiry and I’m proud that we are taking steps to improve the financial support available to those infected, and their families.
We will be holding our AGM on 20th May 2017, at beautiful Loch Katrine. We will be meeting at 1pm for lunch, with a talk on recent developments in treatment (speaker to be announced), then sailing on The SS Walter Scott from 2:30-3:30pm. The restaurant and boat are fully accessible and there will be activities for children while the talk in on. More info will follow soon!
Just a wee reminder that we will be at the Loch Ness Marathon Festival on Sunday. Do pop by and say hello, find out more about our events, stay for a coffee, enjoy the activities and join us for lunch.
We’ll be at the Italian Coffee Bar from 11-1pm, then going for lunch from 1-2pm at the Food & Drink Fayre, with a choice of everything from venison burgers, risotto, hog roast to home-baking and ice cream. You can also enjoy whisky and spirit tasting and locally crafted beers. To find us, look out for the red Haemophilia Scotland umbrella. Depending on reception (!) you will be able to get us on 07930 316190 too.
More info on the day can be found here: https://haemophilia.scot/support/events/join-us-at-the-loch-ness-marathon-festival/ and http://www.lochnessmarathon.com/ If you have any questions, get in touch with Emma on 0131 281 0857, via Facebook or firstname.lastname@example.org
We are delighted that our friends in the Society of Haemophilia and Allied Disorders in Malawi continue to go from strength to strength. They were accepted as an Associate Member of the World Federation of Hemophilia (WFH) at Global Congress in Orlando in July.
WFH President, Alain Weill, said,
I am extremely pleased to welcome the Society of Haemophilia and Allied Disorders (SHAD) in Malawi to the WFH family of National Member Organisations (NMOs). The accreditation of SHAD as an NMO is the result of relationship building with Malawi by WFH staff and volunteers that dates back to 2013. I am thrilled that this effort bore fruit, and that we will continue to work closely with SHAD to support their efforts to improve care for patients with hemophilia and related bleeding disorders in Malawi. I would also like to extend my thanks and gratitude to Haemophilia Scotland for all the excellent support they continue to provide to SHAD and its staff.
Haemophilia Scotland CEO, Dan Farthing-Sykes, said,
Haemophilia Scotland is honoured to have played a part in supporting our friends at SHAD and are delighted to see them get this international recognition. Working with SHAD to deliver our joint Malawi Diagnosis Project has show just how much can be achieved when organisations like ours come together. We look forward to many more years working together to improve the diagnosis, treatment, and care of people with bleeding disorders in Malawi. Anyone wanting to support this work can donate to the project directly using Just Giving.
The WFH constitution prohibits Haemophilia Scotland from becoming an NMO ourselves but we work closely with the WFH as part of our international work. We are particularly excited that the WFH Congress will be in Glasgow in 2018 and will be working with The Haemophilia Society to make that a success.
We have some great events coming up in Inverness and Aberdeen, and we hope there will be something for everyone. So far, most of our events have been around Glasgow and Edinburgh, so we are really keen to be in the North more and hope members from all regions will be able to meet up and join us there. All events are free of charge, we can provide travel costs and all details on accessibility. You can book or find out more info on our website or by getting in touch with Emma on 0131 281 0857 or email@example.com. If there is anything stopping you from coming along to events or if you would like to make suggestions, please get in touch.
On 25th September we will be at The Inverness Marathon Festival from 11am- 2pm, enjoying the music, food and drink, and family activities (ahem, and watching the running, of course!). We would love to see you there! Please drop by and say hello, find out more about our events and support, and join us for lunch. There will be loads happening on the day, including live music, a food fayre, whisky tasting, locally crafted beer and family activities.
On 8th October we will be heading to Transition Extreme in Aberdeen! Join us for Lunch and an instructor led climbing wall session from 1-4pm. All sessions are safe and will be supervised, we will also have support from the wonderful staff from the Aberdeen Centre.
More details can be found here: https://wordpress.com/page/haemophilia.scot/6252
Then on 3rd November, we are going to see The Andy Gunn band at Eden Court, Inverness. This is our first evening event, and looks like it is going to be great!
Highland blues guitarist (and Haemophilia Scotland Member!) Andy Gunn and his band take to the Eden Court stage for a night of electrifying blues standards and well honed original material from their new album Blessed. Also performing will be singer Vikki Kitson (who was in Jumpin´The Gunn with Andy when the brilliant school band signed with Virgin´s blues label).
Lord Penrose made just one recommendation that,
the Scottish Government takes all reasonable steps to offer an HCV test to everyone in Scotland who had a blood transfusion before September 1991 and who has not been tested for HCV
In response, the Scottish Government asked Health Protection Scotland to establish a that a Short-Life Working Group to bring forward recommendations about what practical steps could be taken to implement the recommendation from the Inquiry.
The group unanimously made three recommendations,
- Delivering a targeted awareness campaign focused solely on individuals who received a blood transfusion pre-September 1991. This awareness campaign should aim to reach all targeted individuals through the use of (e.g. leaflets and posters) and more modern (e.g. social media) approaches. Such approaches recognize that an appreciable minority of people do not access information from more traditional sources. The details surrounding the design and implementation of the campaign would be worked on following any such Scottish Government approval. The SLWG agreed that any such campaign should be evaluated to determine its impact.
- The identification and written offer of an HCV test to a group (up to 71) of plasma product factor recipients who are as yet not known to have been HCV tested.
- A Chief Medical Officer letter should be sent to all clinicians in Scotland to remind them of certain risk factors (including pre-September 1991 blood transfusion and injecting drug use) and clinical (including otherwise unexplained Alanine Aminotransferase (ALT) liver enzyme level) indicators for HCV infection and making them aware of the recent advances in therapy and thus the benefits of HCV testing.
All three recommendations of the Short-Life Working Group are being implemented by the Scottish Government, with work already well underway. The public awareness campaign, for example, is due to be launched later this month.
Cabinet Secretary for Health, Wellbeing, and Sport, Shona Robison MSP has said,
…I have today accepted all these recommendations to ensure that everything possible is done to find people who may have been infected and offer them the best care and treatment. …I would urge anyone who thinks they had a blood transfusion before September 1991 to seek advice from the Hepatitis helpline or their GP practice about a test if they have not yet done so.
Haemophilia Scotland CEO, Dan Farthing-Sykes, who served on the group said,
Perhaps the most surprising recommendation to the bleeding disorders community in Scotland will be Recommendation 2. The names referred to were uncovered by the look-back exercise conducted by the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) on behalf of the Haemophilia Alliance. They are individuals who are thought to have received treatment in a Scottish Haemophilia Centre during the relevant period who have been lost to follow-up. These efforts to find them are vital both in terms of their likely infection and the proper care of their bleeding disorder.
I know contaminated blood campaigners will be also be interested that the statistical work conducted as part of this process. That work concluded that ‘the number of [living] undiagnosed HCV-infected people, having acquired their HCV in Scotland as a result of blood transfusion pre-1991, is within the range of 0 and 63’. In fact, it is thought to be as low as 32, once those who have been diagnosed in other ways are taken into account. This in stark contrast to the figures of tens of thousands across the UK which have been suggested in the past. Those higher figures have often been given as a reason that the levels of financial support couldn’t be at set at more appropriate levels.
Join us for an instructor led climbing wall session at Transition Extreme Aberdeen on the 8th of October.
Transition Extreme is a first-class facility, recognised by the Mountaineering Council of Scotland as a regional centre of excellence. Its amazing facilities provide the perfect introduction to indoor climbing. It’s a brilliant combination of exercise, psychological challenge and chance to build lasting friendships.
This is part of a new series of events running which are aimed at to bringing teens and young adults together. But everyone is welcome at this event for both the lunch and climb, and we would love to see you there! Looks like great fun! All costs for lunch and the climbing sessions will be covered, so this event will be free of charge. Assistance with travel costs are available on request.
There will be instructors with us for the whole session, so this will be suitable for all levels. We will start with lunch at 1pm in the cafe, and will be on the climbing wall from 2-3:30pm. It is rare for injury to happen at the climbing wall, but we will be accompanied by fantastic staff of the Aberdeen centre on the day. Should be great fun!!
If you have any questions or would like more info, please contact Emma on 0131 281 0857 or firstname.lastname@example.org