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COVID-19 pandemic:
What it means for families

 

A comprehensive survey of Scotland’s HD community, which took place in the first weeks of the lockdown, has identified specific and unique challenges being faced by families during the COVID-19 pandemic.

 

We received 171 responses from across the country and are now taking immediate steps to ensure the best care and support is in place.

 

In the first instance, this includes providing additional information for carers about what to do in an emergency situation; clarification of ‘shielding’ arrangements for people with HD; ways to access help with practical tasks such as shopping and banking; and creating opportunities for carers to connect with each other to reduce isolation and support their mental health and wellbeing.

 

READ THE FULL SURVEY FINDINGS HERE

 

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

SHA services and support updates

 

27 May 2020

 

We're taking urgent steps during the COVID-19 pandemic to support families with their mental health and other challenges.

 

Emergency funding from the Scottish Government has been secured to launch a virtual wellbeing hub after our recent survey revealed that two in three HD families have concerns about loved ones struggling to cope.

 

The funding comes from the Wellbeing Fund, a Scottish Government initiative to support charities working with people most affected by coronavirus.

 

The fear of increased loneliness, financial hardship and reduced care support is increasing the stress on HD family members, says the charity’s Chief Executive John Eden.

 

“We've been listening to what people with HD and their families say about the impact of COVID-19 on their lives. Direct feedback from families, our staff, combined with our recent survey, has shaped our understanding and we now know many families are really worried about their finances, care arrangements, the extra pressure on carers and mental health.

 

“As a community, people with HD are resilient - they have to be - and as a charity we also want to show we can step up when the pressure is on. We therefore secured funding from the Scottish Government’s Wellbeing Fund to set up a 'virtual hub' that will provide additional help for people who are isolated, give carers more one-to-one support, and be there for people with HD."

 

The new service will be up and running at the beginning of June.

 

READ FULL STORY

 

18 May 2020

 

The UK Government Furlough scheme has been extended for another four months - more information can be found here.

 

People who are already claiming Carers' Allowance are to receive a one-off payment of £2310.10 from the Scottish Government in recognition of the additional work and responsibilities as a result of COVID-19. This will be paid in June, date still to be confirmed. Find out more.

 

Visit our Financial Wellbeing Services COVID-19 page for more details about the latest support available.

 

7 May 2020


Information for families

Access to ventilation support; the Shielding Programme and Caring in a Crisis

We've had a high response to SHA's recent COVID-19 survey from families all over Scotland as we seek to understand the additional challenges being faced by our HD community as a result of the pandemic. In the first instance, we have prepared the guidelines below to provide clarity and reassurance regarding three specific areas of concern that have been identified.

 

Anxieties over ventilation support
A number of people expressed anxiety about whether they would be denied access to ventilation because of their HD diagnosis.

These fears undoubtedly arose out of discussion in the media in the early days of the pandemic after the British Medical Association issued guidance to doctors about making clinical decision if there was a shortage of ventilator equipment. Then, there was concern the NHS could be overwhelmed by the numbers of people with COVID-19 who needed the support of a ventilator and the BMA was responding to concerns doctors had about being asked to make impossible life or death decisions.

In Scotland, the neurological community has sought a clear answer from the Scottish Government on its policy and we can unequivocally report that everyone in Scotland who needs ventilator support, regardless of any pre-existing condition, will receive it. The Scottish Government has explicitly stated the principle that ‘every life has equal value’ has shaped their policy response to the pandemic. If this has been something you are worried about, you can be reassured that if you contract COVID-19, you will receive all the care and treatment you need.

 

Unsure about shielding

 

You will have seen lots of coverage about the Scottish Government’s ‘Shielding Programme’ which was designed to protect people most at risk from COVID-19. Our COVID-19 survey revealed a few people who expected to be in the shielded category had not received a letter.. Some people were concerned this meant they could not access additional assistance from the Scottish Government helpline and perhaps felt their own or a family member’s vulnerability had not been recognised.

 

The big challenge faced by the Government was identifying everyone who potentially needed to be shielded. Unfortunately, it does not have complete lists for people with any condition. This is the biggest reason why some people with HD have not received a letter. Complicating this further, many and perhaps most people with HD do not need to be shielded. Having the HD gene does not make you more susceptible to COVID-19, but as the condition progresses some of the problems associated with it might, for example, having significant swallowing difficulties, being immobile or having significant difficulty with nutrition.

 

SHA’s advice is, if you have concerns about yourself or a family member, you can make your own decision to follow the shielding guidelines. If you need advice you can speak to your GP or HD Specialist. If you are not in the shielding group, you can still access all the help you need in your local area. Every part of Scotland now has a COVID-19 Hub, these were set up to coordinate the care and support of everyone who needs it and your local HD Specialist or Specialist Nurse can help you get access.

 

The Scottish Government is continuing its programme of identifying people who may be at greater risk of COVID-19 and over time will get better at identifying those who may need additional protection. SHA is aware the Scottish Government is currently working on a second phase of the shielding programme that will attempt to identify other individuals who may be at additional risk, and we will let you know when we have further information.

 

Caring in a crisis

 


The survey also revealed a great deal of anxiety among carers about would happen if they contracted the virus and were unable to care for the person with HD they support.

 

Everyone’s situation is different, and SHA recommends carers should prepare a crisis plan that sets out what you need to do or where to get help if that eventuality arises. Your plan might be relatively straightforward if there are other family members, friends or neighbours who are able to step in and provide support, but if you have already had those conversations, it will make managing a crisis less stressful.

 

If that is not an option, you may want to have a discussion with your HD Specialist or GP about putting in place an anticipatory care plan that includes arrangements for looking after the person you support. Local Social Work teams are geared up to respond to emergencies and can organise additional support at home, or respite care until you are well again. Of course, these solutions need to be thought through and every person with HD is different – you will know best how the person you support may react to changes in their care and support or understand the reasons.

 

The more conversations you have with the person with HD, if they are able, and with family and professionals in your support network, the better you will be prepared to cope.

 

Our team of HD Specialists is here with support and advice to help you prepare a plan. The full findings from our survey can be found on the SHA website here. Please don't hesitate to get in touch by email sha-admin@hdscotland.org or phone 0141 848 0308 should you have other concerns or would like further information.

 

29 April 2020

 

We've updated our Financial Wellbeing Service Information page with practical advice for vulnerable people who are struggling to access their money or pay bills. It includes details about the support being provided by banks, which includes dedicated helplines, and guidance from utility companies for prepayment customers who are worried about topping up their meter.

 

27 April 2020

 

It’s important that families are accessing the right support and services, including routine and urgent health care. Therefore, if you have concerns about any changes in the health and wellbeing of you or your family members you should not hesitate to call for assistance.

In accordance with Scottish government guidelines, you should contact the services below if you or a loved one needs medical treatment:

  • For HD-related or other non-COVID19 issues, telephone your GP practice or health centre just as you usually would.
  • If the surgery is closed (at evenings/weekends), and you can’t wait because it’s urgent, call NHS 24 on 111. (For emergencies, you would dial 999).
  • Patients with coronavirus (COVID-19) symptoms are asked not to visit their GP surgery. Instead they should to go to NHS Inform and call NHS 24 on 111, day or night, should symptoms worsen or not improve after seven days. If a sick note is needed, it can be obtained through NHS Inform.

If you are unable to access assistance and are still worried or have any questions or concerns, please contact your HD Specialist for support.

 

21 April 2020

 

We’ve updated our Financial Wellbeing Service information page with the latest details about Government packages of support for employed, self-employed and people accessing benefits.

 

20 April 2020

 

Today sees the launch of SHA’s Stay Home and Step Up appeal. During these difficult times, SHA is providing a vital safety net for families who might otherwise be left to cope alone. Our HD Specialists, Financial Wellbeing Team and SHAYP youth advisors are reaching out to families all over Scotland, making sure that each receives the support and information they need. At the same time, the charity’s funding steams have been hit, with the cancellation or postponement of all SHA and volunteer-led fundraising events. Stay Home and Step Up invites existing and new supporters to help HD families in their communities by making a donation or taking part in one our three fun challenges.

 

15 April 2020

 

We’ve updated our Financial Wellbeing Service information page with the latest details about Government packages of support for employed, self employed and people accessing benefits. It also includes advice about managing mortgage and loan payments, and support that is available for students facing hardship. Click here to access.

 

15 April 2020

 

Scottish Government helpline launched

The national helpline, which launched today, provides essential assistance to those who don’t have family or community support and are at high risk of contracting COVID-19. It is aimed at those who cannot get online and who are over 70, disabled, require the support of mental health services, are pregnant or receive a flu jab for health reasons.

However, anyone in the shielding category who is not yet receiving assistance, who do not have family and cannot get online, is able to use the helpline.

Callers will be automatically connected to their local authority for help with:

  • essential food and medication
  • links to local social work services for vulnerable children or adults
  • emotional support
  • contact with local volunteer groups.

Call 0800 111 4000 – lines are open from 9am to 5pm each day, with plans to extend these hours in the near future.

 

8 April 2020

 

SHA is working in partnership with the HD community to make sure that current services are meeting their needs and highlight changes or additional provisions that we may need to consider as a result of the Coronavirus crisis.

To support this critical work, family members from all over Scotland have been invited to share their experiences by taking part in an anonymous survey. We won’t reveal individual information but the overall issues identified may be flagged to key agencies such as the Scottish Government to raise awareness about the problems being faced by the HD Community. The findings will also be used to inform SHA's work with funding organisations to secure the resources needed to deliver lifeline services.

We know it takes valuable time to complete a survey, but the information we gather will really help the charity give the best care to people with HD and their families.

You can complete the survey online by following this link https://www.surveymonkey.co.uk/r/9C578MN.

 

30 March 2020

 

The Financial Wellbeing Service has updated information for people facing financial hardship or worry as a result of the Coronavirus crisis. It includes most recent announcements from the Government in relation to housing protection and support for the self-employed. Full details

Roche has been in touch with an update for people taking part in the tominersen trials. As of 18 March 2020, the studies are ongoing, including the Phase III GENERATION-HD1 study which continues to enrol people with Huntington’s disease across the UK. As the global COVID-19 outbreak evolves, our focus is ensuring both patient safety and data integrity. Roche is working with trial sites to mitigate risks where possible and we are reviewing the situation on an ongoing basis. Please read full message

 

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