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Coronavirus: update and advice

 

We are working hard to minimise the risk to HD families, our staff and volunteers while maintaining delivery of lifeline support that is relied upon by so many.

 

Steps have been laid out by the Government for you to follow to protect yourself and those around you. These are particularly important when you, or someone close to you, is in the ‘high risk’ category because of underlying health conditions. Some people with HD may have a higher risk because they have another condition or their HD is causing secondary problems that affect their respiratory function. People in this situation may need additional support and advice which is given here.

 

Please visit NHS Inform website for the most up-to-date information about handwashing, symptoms and self-isolation periods. Translated advice in 21 languages is available here.

 

SHA services and support updates

 

25th March 2020

 

We know parents and young people in our community will be feeling confused and worried. There are, however, simple steps you can take to keep yourself and others in your family safe. Young Scot Card has created a fantastic guide, which also considers how best to look after mental health and reduce boredom during social isolation,

 

24th March 2020

 

The Financial Wellbeing Service can provide advice and information for any family experience financial hardship or uncertainty as a result of the Coronavirus public health crisis. The government announcements and support measures are changing and moving forward on a daily basis and we will do our best to keep on top of the latest information. Please contact any member of the team for further advice. We will also endeavour to keep this site up to date with useful sources of information and updates. Full Details

 

24th March 2020

 

Are people with Huntington’s disease at a higher risk in relation to COVID-19?


Huntington’s disease itself does not necessarily put patients at a higher risk of getting COVID-19. However, people with symptoms of HD may be more likely to develop pneumonia as a result of some of the following:

  • If they have another condition that affects their breathing or immune system.
  • If they are prone to frequent chest infections e.g. because of problems with swallowing.
  • If they have lost their mobility, have very poor mobility and are carer for long periods in bed or in a seated position.
  • They have problems maintaining a healthy body weight (sometimes called Body Mass Index)
  • If they have cognitive problems which mean they are less able to comply with guidelines on avoiding the virus, extra hygiene measures or staying at home.
  • If they are older than 70 and as well as having any of the above concerns.

If you think you are affected or look after someone who is affected by any of these issues recommend, as far as it is possible, you consider self-isolating for twelve weeks as per the Government guidelines for people in vulnerable groups.

We recognise this is not easy and everyone’s circumstances are very different and will impact on their ability to do this. If you need further advice, please speak with your Specialist team.

 

19th March 2020

 

SHA’s Head Office in Paisley will close tomorrow, Friday, 20 March but all SHA services will remain up and running. Staff including HD Specialists, fundraisers and Financial Wellbeing Officers, are working from home and telephone consultations will replace all face-to-face appointments in line with latest government guidance. Clients should contact their HD Specialist, SHAYP advisor or the Financial Wellbeing Service on their mobiles or by calling 0141 848 0308. The Fundraising Team can be contacted at fundraising@hdscotland.org.

 

18th March 2020


We have taken urgent steps to ensure HD families in Scotland continue to receive the care and services they rely on, especially during these difficult times.

 

Staff working
Most of our staff, including HD Specialists, are now working from home. The small number of office-based colleagues (finance and admin) will have no face-to-face contact with HD Specialists, families or volunteers, and the head office is now closed to visitors.

 

Client meetings

Meetings with HD Specialists will continue, however home visits will be limited. Alternative arrangements, including telephone consultations, are being put in place. Your HD Specialist will be in touch to talk through the approach that works best for you and your family.

 

Care home/hospital visits

SHA staff visits to care homes and hospitals are suspended, again we will be in touch to talk through different options, including telephone support.

 

Conferences and activities

Events have been cancelled, including SHAYP’s spring activities for young people and the Carers’ Conference which was due to be held in May. A number of other events are under review and we will keep you updated.

 

Supporting young people

SHAYP will continue to support young people growing up in HD families; your advisor will be in touch with more details.

 

Benefits and financial advice

Our Financial Wellbeing Service will continue to provide expert advice to families facing hardship, including those who are now facing disruption at work or loss of salary as a result of coronavirus. Home visits will be limited, however telephone and video conferencing calls will be available.

 

Fundraising

It is vital that we raise money to safeguard services for HD families, and we encourage our wonderful supporters to do all they can to help within the restrictions of current guidelines. Contact our Fundraising Team on fundraising@hdscotland.org.

 

#TeamSHA Challenges and events
Our calendar of events remains in place for now, however the events are subject to change as the situation develops. Updates will be posted on our Facebook and Twitter pages.

 

Keep up to date

Regular updates will be shared with families, partners, funders and staff through our website page and on Facebook and Twitter. Where appropriate, we will also get in touch with you by email or telephone phone.

 

Stay in touch
If you require any information or support, please don’t hesitate to get in touch on 0141 848 0308 or email us SHA-admin@hdscotland.org

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