Health and Welfare Advice

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We have been talking to Citizens Advice Scotland about the increasing difficulties with claiming and retaining benefits. We have contacts for Edinburgh, Glasgow and Falkirk so far, and are working on adding more. This contact information will be added to the website on Monday.  You can also locate services in your area here:https://www.citizensadvice.org.uk/scotland/

If you are having problems, please give them a call as soon as you can. Citizens Advice Scotland are local, independent charities that provide free and confidential advice and information whoever you are and whatever your problem.

They can help you:
improve your financial situation
make sure that you’re getting all the benefits you’re entitled to

Their service is free, confidential, impartial and independent. They can answer most questions over the telephone, but can arrange a meeting if that would be better.

They will help you:
claim the right benefits so you are getting all the money you can
sort out problems with your claim
appeal against a decision that you think is wrong

What kind of benefits can you claim?

You may be able to claim from a wide range of benefits. They can help you find which is right for you, for example:
Attendance Allowance
Carer’s Allowance
Child Benefit
Child Tax Credit
Council Tax Reduction Scheme
Disability Living Allowance
Employment and Support Allowance
Housing Benefit
Income Support
Industrial Injuries Benefit
Jobseeker’s Allowance
Pension Credit
Personal Independence Payments
Universal Credit
Working Tax Credit

 

The excitement builds for Sunday’s Zoo trip!

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It is nearly time for our zoo trip on 19th Feb! We are really excited and are looking forward to seeing you all!

We have an amazing crowd signed up, so it is going to be a great chance to get to know each other and have a brilliant day out!

On arrival, we will have people at the ticket office waiting to meet and greet (just look for the Haemophilia Scotland umbrellas).  Once inside the zoo, we will be meeting from 12-1pm at the Mansion House inside the zoo. Here, you can sign in, drop your bags and go for a wander or chill out in the space.

From 1-2pm, we will be having a family-friendly buffet lunch in the Mansion House.

Then from 2-3pm, we will be paying the pandas a visit, then testing our bravery with some small animal handling sessions, including snakes and spiders. For the parents, there will be a special space to catch up and discuss what matters to you

3-4pm, will be your free time to wander – then at 4pm, we are back at Mansion House for Sandra’s quiz and the ice cream cart! 
We have parking at Mansion House ,and a map of how to get to the zoo (including public transport), can be found here:

http://www.edinburghzoo.org.uk/plan-your-visit/day-planner/how-to-get-here/

We will have the Mansion House all day, and you can return at any point in the day to meet up or chill out. Our finish time will be around 5pm.

Entry, activities, lunch and refreshments are all free of charge, and we can help with travel costs. Please let us know on the day if you need an expenses claim form.

All areas and activities are fully accessible. Looks like a great day out!

 

 

 

Contaminated Blood Forms Deadline TODAY

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Over the last couple of weeks everyone who has received money from one of the UK-wide contaminated blood financial support schemes, who qualifies for the new Scottish support scheme, should have received at least one letter.

You should have received a letter from each of the schemes you have received money from, whether that be the Skipton Fund, MacFarlane Trust, or the Caxton Foundation –  know together as the Alliance House organisations.

The purpose of the form is to allow these UK-wide organisations to pass your details to the new Scottish scheme.  The idea is to avoid the necessity to reregister which would involved unnecessary form filling.

To allow the transfer of data to go smoothly your information needs to be returned to Alliance House today.  If you haven’t returned your form please post it back immediately.  If you think you should have received a form but haven’t please contact Dan Farthing-Sykes on dan@haemophilia.scot or 0131 524 7286.

Raise funds while you shop – it won’t cost you a penny!

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Before you click “buy” on that last minute Valentine’s Day gift, did you know that whenever you buy anything online you could be raising a free donation for Haemophilia Scotland? At easyfundraising, there are over 3,100 shops and sites on board ready to make a donation when you shop with them, including Amazon, John Lewis and Sainsbury’s and it doesn’t cost you a penny extra! To get started, all you have to do is:

  1. Join. Head for the Haemophilia Scotland easyfundraising page and sign up for free.
  2. Shop. Every time you shop online, go to easyfundraising first, pick the retailer you want and start shopping.
  3. Raise. After you’ve checked out, that retailer will make a donation to Haemophilia Scotland and it won’t cost you a penny extra!

Please help us raise as much as possible – there are no catches or hidden charges and we will be really grateful for your donations.

Thank you for your support!

Fundraiser gig featuring The Andy Gunn Band and lots more local musical talent!

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We are excited! And very grateful to all the bands who will be playing @parkhotelthurso to raise funds for Haemophilia Scotland. Special thanks go to Jack Macphee and Richie Campbell  for organising this amazing event. If you want to come along and meet up there, just let us know! Andy has just uploaded some brilliant clips from recent gigs to his facebook page, so check out his music at https://www.facebook.com/andygunnmusic/ and http://andygunn.net/ – looks like it will be a great night!

Are you ready for #RareDiseasesDay 2017?

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 InstagramFacebook 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!

 

 

http://img.rarediseaseday.org.s3.amazonaws.com/js/iframe.html

Invitation to amazing puzzle room day for young people with Haemophilia (input into your services & save the world!)

 

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The Edinburgh Service are currently looking at how Centres move patients from paediatric to adult services (known as Transition) and would value your input in designing a new approach. We will be holding  a  fun filled day focusing on this.

 

escape2We are holding  a ‘Puzzle Room’* event in Edinburgh. 

The day will be divided into two parts: (1) escaping a ‘puzzle room’* to save the world, and (2) discussion about your experience of transferring care from paediatric to adult services. We are interested in hearing about what has gone well and not so well for you and your family in the transition of care. We would also like to ask you what you would like in a future service.

 

 

We are also keen to hear from your parents on how the process could be improved to better support them. Both of your input is greatly appreciated as the information gathered will help us to change the process so that it is helpful for people with haemophilia and their families in the future.

Who: Young People with Haemophilia who are preparing to or have recently transitioned from Paediatric to Adult services (e.g. 15 – 22 yrs approx) and a parent

When: Saturday 11th March 10am – approx 3pm (including lunch)

Where: Haymarket, Edinburgh (Meeting initially at Capital Business Centre, Canning Street and puzzle room at http://www.escapeteambuilding.co.uk)

Haemophilia Scotland have kindly offered to help with travel Costs

What do you need to do?

We have limited places for this event so will be operating a first come first serve basis.  If you or your parent  would like more information about the event or would like to book a place please telephone the Edinburgh Centre on 0131 242 1270 and speak with Gráinne O’ Brien or Susan Hook. 

We look forward to seeing you in March.

*What is a puzzle room?

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It is a team game. The goal of the game is to escape a locked room within 60 minutes. Your team must solve many puzzles, brain teasers and identify clues. Using your powers of observation and problem solving you and your team will work together to solve the problems and escape the room.

 

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