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Covid 19 (Coronavirus) - Information for Shine Members

31st March 2020

 

If you have been affected by the current situation and are in need of Shine's services, click on the link below to find out how we can support you at this difficult time.

We are committed to continuing to deliver our support, advice and information services for you.

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Regular updates on Covid-19 (Coronavirus) can be found below:

COVID-19 (Coronavirus)

 

31st March 2020

A number of organisations have produced information about conditions which may increase vulnerability to coronavirus.

We have compiled a list of links that you may find useful here: 

 

25th March 2020

New guidelines 
New instructions have been issued by the government that we ALL now need to follow: 

STAY HOME 

You should only leave the house for one of the following reasons and do so for as little time as possible, keeping two metres away from anyone not part of your household: 

  • Shopping for necessities, e.g. food and medicine. This must be done as infrequently as possible.  
  • To exercise once a day, e.g. run, walk, or cycle. This can be done alone or with members of your household.  
  • For medical reasons, or to care for or assist a vulnerable person.  
  • Travelling to work and back, but only where work absolutely cannot be done from home.

Full information on the new rules can be found here

It is so important to follow these rules as much as possible. This powerful video by the Belfast Health and Social Care Trust outlines why


Clinics 

Due to the coronavirus situation many of the routine clinics have been suspended until further notice. Those whose appointments have been cancelled will be notified. Try not to worry about whether future appointments will or will not go ahead. You can check the hospital website for updates but only contact the clinic if you haven’t heard anything by the day before you are due to attend as the health service is extremely busy at this time. Urgent medical help will still be available to you and some non-urgent services such as GP surgeries and physiotherapy are starting to offer remote appointments.  

Out of hours services are still available - click here for more information.

And pharmacies remain open and able to offer support - click here for more information.

We understand that this disruption to services may be difficult and distressing however these changes are absolutely essential for the safety of us all and for future of the NHS. Suspending clinics makes it easier for you to follow social distancing/isolating/shielding measures, which reduces the chance of you catching and/or spreading the virus. It also allows the NHS staff and resources to be focused on the urgent care needs of the critically ill.  

Register for government assistance 

If you have a medical condition that makes you vulnerable to coronavirus you can register for assistance from the government e.g. help getting deliveries of basic necessities like food. If you’re not sure whether your particular medical circumstances make you extremely vulnerable, you can register anyway. You can register for yourself, or someone else here. 
 
Useful information 

 

23rd March 2020

Am I vulnerable/at high risk? 

Although spina bifida and hydrocephalus are neurological conditions there is a large spectrum of severity and there is a range of associated conditions. Everyone is different. Spina bifida and/or hydrocephalus have not specifically been linked to a high risk of catching coronavirus or developing severe disease. 

However, due to other associated conditions, your age or medical reasons you may be classified as vulnerable under the government’s advice.

This applies to: 

If you have spina bifida or hydrocephalus and fall into any of the above categories, then you should follow the government guidance for vulnerable groups.

So what should I be doing?

At present there is no difference in what the advised actions and behaviours are for the vulnerable groups compared with the general population (see table below). The difference is in how strongly you are advised to do it. At this time we should all be as careful as we possibly can and try to follow the government’s advice. 

* if one member of your family or household has a new continuous cough or high temperature 
** if you live alone and you have a new continuous cough or high temperature 
*** noting cinemas, theatres, pubs, bars, restaurants and clubs are now all required to close. If you meet others when you are outdoors (for example, on a walk) ensure that you stay at least 2 meters away. 
**** for example via telephone or internet 
1 e.g. anyone instructed to get a flu jab each year on medical grounds 

There is a difference for those with very serious underlying health conditions. This includes 1.5 million people who have been identified as being at the highest risk and who will be contacted by their GP in this coming week. They will be issued with bespoke guidance for even stricter isolation measures called “shielding”. More information about shielding and who this includes (including what to do if you live with someone this applies to) can be found here.

Depending on your health conditions this may or may not apply to you. Your GP will assess your individual circumstances and if you are in the group who need to follow the shielding measures you will be contacted and told what you need to do. If you do not hear anything then continue to limit your contact with others as much as you possibly can and follow strict hygiene, these are the best ways to protect yourself and others. 

Why is all this necessary?

This video offers a fantastic explanation of what coronavirus is and why it is so important that we do all we can to stop ourselves getting infected and to stop ourselves infecting others:

How are Shine campaigning for members?

We are working with the Disability Benefits Consortium and Care and Support Alliance and other similar collaborations of charities. Together we will look at the implications of the emergency legislative, policy and guidance changes, which the government are proposing due to COVID 19 and collectively challenge anything which concerns us. Collective action brings together the voices of over 150 organisations which work for disabled people, therefore we are much stronger together, and we will do all we can. 

17th March 2020

We must all now follow the Government’s updated advice to help prevent the spread of coronavirus and reduce its impact. We should all continue to observe good hand hygiene and ‘cough & sneeze’ hygiene and we ALL now need to follow the social distancing advice from the Government: 

As much as possible you need to: 

  1. Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough; 
  2. Avoid using public transport wherever possible, changing your travel times to avoid rush hour, when possible;  
  3. Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information; 
  4. Avoid large gatherings, and gatherings in smaller public spaces such as pubs, cinemas, restaurants, theatres, bars, clubs; 
  5. Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media; 
  6. Use telephone or online services to contact your GP or other essential services. 

The government advice is outlined in detail here.

The procedure for if you have symptoms of coronavirus has changed again and is outlined here.

The government has indicated that we will very soon enter a period where people in vulnerable groups will need to fully self-isolate for 12-weeks. More details will be released soon and we will update you here. In the meantime, a point of understandably great concern to our members is whether people with spina bifida and hydrocephalus are classed as vulnerable i.e. at risk of severe infection and complications with coronavirus. Unfortunately, there’s no single, clear answer to this. Very limited data are available as coronavirus is a new disease and spina bifida and hydrocephalus are relatively rare. Evaluation of the risks of spina bifida or hydrocephalus themselves is complicated because spina bifida and hydrocephalus are so often associated with other underlying conditions. At present spina bifida and hydrocephalus have not themselves been linked to a high risk of catching coronavirus or developing severe disease in adults or in children
 
The groups that the UK government currently include in their list of those considered vulnerable are:  

If you have spina bifida or hydrocephalus and fall into any of the above categories, then you should follow the government guidance for at-risk groups.  

Shine, the Hydrocephalus Association and The Spina Bifida Association all share the position that the conditions alone are not risk factors for severe coronavirus disease. We will update here if new information arises that changes this. 

Some members have expressed concern about a CDC report on “Strategies for Communities with local COVID-19 Transmission” that lists “Neurological and neurologic and neurodevelopment conditions” in an appendix of underlying medical conditions with potential to increase serious coronavirus disease. No evidence or research is given to explain or support the inclusion of “disorders of the brain, spinal cord...”, they are not included in other CDC literature on risk factors and no research appears to account for their inclusion on the list. The Hydrocephalus Association wrote about this in more detail here and also concluded that there was no supporting evidence for this or for a specifically elevated risk in hydrocephalus. 

There is evidence in the available research that the following are linked to increased risk of more severe disease: being over 60, having diabetes, high blood pressure, heart disease, lung disease, stroke, cancer, liver disease, chronic kidney disease, and weakened immune system. The studies showing that these other conditions raise the risk for severe complications has helped form the basis of the UK governments recommendations. If you have one of these underlying conditions as well as spina bifida or hydrocephalus then you are classified as at-risk and should follow the government guidelines for this group. 

We understand this may be a difficult time for many people, we have been working hard behind the scenes to make sure we are ready and able to keep supporting you as things change. Other organisations have some fantastic information for how to keep healthy and happy at this stressful time, some brilliant examples include: 

Mind

Harvard Heath

World Health Organization - WHO

Quit

The Conversation

 

16th March 2020

Getting information:

Huge amounts of information are being shared about coronavirus and we know this can be confusing and overwhelming. We recommend sticking to a few reliable websites for your information. We will keep you updated here with anything that particularly affects our members and we will always use the best available evidence for this. The specific risks of coronavirus in spina bifida and hydrocephalus are not currently known and so our guidelines are deliberately cautious. We have worked on the basis that people with spina bifida and hydrocephalus might be more at risk of becoming more seriously ill than others, and so should take measures as though they were more vulnerable.  
 
Please read our updates from the 11th, 10th and 4th of March. Please also keep an eye on the NHS and government websites.
 
Daily briefings from the government will now be taking place and will be televised. The first of such briefings will be 16/03/2020 at 4.45 pm. We advise you to keep updated by watching live and/or catching up later in the day. 

Multilingual information:

If you want or need information about coronavirus in different languages, resources are available here

Parents:

The risk of serious disease from coronavirus in children appears to be very low. The condition-specific effects of spina bifida and hydrocephalus are unknown (except where co-existing health problems increase risk: diabetes, heart & lung disease).

If you have concerns, we suggest you contact your child’s school to see what precautions they are taking and to discuss the possibility of temporary home study. Until the government officially closes them, any decisions you make must be in discussion with your child’s school to avoid disciplinary action or fines, and to ensure continuity of study.

If you do make arrangements for your child to study at home, it’s important to keep doing things that support their health and social development as well as their academic studies: Make fresh air and exercise a part of their day and help them to keep in touch with their friends using social media and video chat. The Department of Education has some advice for schools here.

Benefits

The Government have announced a number of changes to the benefits system as a consequence of the Corona Virus outbreak.  What follows is a summary, please follow the links to the official gov.uk website for further information.  
  

  1. As of 17th March all face to face assessments relating to Personal Independence Payment, Employment & Support Allowance and Universal Credit have been suspended for 3 months. If you have already been given a date, you will be contacted to arrange an alternative, such as a telephone or paper based assessment. If at all possible, our advice would be that you should opt for a telephone assessment, rather than an assessment based simply on the paperwork, your claim form and/or additional evidence. 
  2. People being reassessed for Personal Independence Payment (PIP) or Employment and Support Allowance (ESA) will continue to be paid until an alternative arrangement can be made. 
  3. Anyone making a claim for ESA or Universal Credit (UC) on the basis of Corona Virus won’t have to submit a Fit Note.
  4. Claimants of Job Seekers Allowance (JSA), ESA and UC will have any work search, availability or any other conditionality removed during a period of illness.
  5. New claimants for UC with Corona Virus will be allowed to make a claim and apply for a month’s advance without attending the Job Centre.
  6. People who cannot work due to coronavirus and are eligible for Statutory Sick Pay will get it from the first day of illness, rather than from the fourth day.  
  7. Statutory Sick Pay will be payable to people who are staying at home on government advice, not just those who are infected.  
  8. If employees need to provide evidence to their employer that they need to stay at home due to coronavirus, they will be able to get it from the NHS 111 Online instead of having to get a fit note from their doctor.  
  9. Self-employed claimants on Universal Credit who are required to stay at home or are ill as a result of coronavirus will not have a Minimum Income Floor (an assumed level of income) applied for a period of time while affected.  

What to do if you think you might have symptoms

Guidelines if you have symptoms: New government guidelines have been brought in for what to do if you think you might have symptoms of coronavirus. We have produced a flow chart to help you take the right steps: 

11th March 2020

How does coronavirus specifically affect those with spina bifida and/or hydrocephalus?

  • We currently don’t know for certain whether coronavirus infection is any different if you have spina bifida and/or hydrocephalus.
  • The most serious complications of coronavirus seem to be breathing difficulties rather than neurological problems, especially in people who already have heart or breathing disorders.
  • There is no reason to believe that shunts would be affected by the virus.
  • Other respiratory diseases such as flu can cause more severe symptoms in people with spina bifida who have reduced lung capacity due to spinal curvature. We don’t yet know if the same is true for coronavirus but it is sensible to take measures protect and prepare yourself just in case.

The key measures we recommend, and the reasons for them, are summarised below but please re-read the advice in our previous statements (March 10th and March 6th) for more detail:  

  • Hygiene and social distancing are important to prevent catching and spreading the virus
  • Planning for continuity of care and getting a couple of weeks’ worth of supplies in are important in case you need to stay at home and normal services become disrupted
  • Knowing to call 111 if you become unwell with a high temperature and dry cough is important to make sure you get the right care
  • Our guidelines are suitable for all Shine members, the recommendations go further than the current government advice because we want to take a more cautious and proactive approach to this new disease.

10th March 2020

As you may be aware, coronavirus is now spreading more widely in the UK. It spreads from a person who has the virus, even if they don’t have symptoms and feel well.

The virus is spread in the air by droplets from the mouth, throat or nose of someone with the virus, in coughs or sneezes, and the hands, dirty tissues and on surfaces.  People with long-term health issues may be more affected than the general population, especially people with breathing or kidney issues.  
 
At this time, we advise that you continue to follow the guidance for protective and preventative measures in our first statement here
 
We also advise that you now try to: 

  • Avoid crowded venues (cinemas, sports events, hospitals, supermarkets, restaurants)  
  • Avoid using public transport where possible (and ensuring thorough handwashing afterwards if you need to use it)  
    Have the NHS instructions on what to do if you’re unwell in a place you can easily find them: https://www.nhs.uk/conditions/coronavirus-covid-19/ 
  • Ensure you wash and dry your hands thoroughly before eating or handling food or drink, before smoking or vaping, and after using public transport, touching supermarket trolleys or after handling money.
  • Avoid trying for a baby if you or your partner have a fever (temperature of 38 °C or higher). 

We have made some changes to our working arrangements for the next month to ensure we can keep supporting you during this time and make sure our staff are safe.

The changes you may notice are:  

Suspension of home visits, groups and events:

This is a precaution to reduce the risk of the virus spreading between members. 

Decrease  in response time:

Due to the increase in member queries and the working adaptations it might take a little longer than usual for us to get back to you but please be patient, we will respond as soon as possible.   

6th March 2020

You’ve probably heard or seen about coronavirus on the news. We want to make sure you know what it is, how it might affect you, and suggest some practical things you can do to protect and prepare yourself.  Shine is also making plans so that we can continue to support you as this situation develops. 

What is coronavirus and how might it affect you? 


Coronavirus is in the same family of viruses that cause diseases such as the common cold and other recent outbreaks such as SARS and MERS. It causes a flu-like illness, with cough, breathing difficulties, high temperature.

These visual guides produced by the BBC using WHO, NHS and PHE information show what to look out for and what to do if you think you might be infected: 

Those over 60 and/or with pre-existing conditions are at higher risk of developing more severe symptoms. We understand you may be concerned about this but the overall risk is still quite low and the advice to help stop catching and spreading the virus is the same for everyone. Follow the guidance of the NHS and public health organisations (England, Wales, Northern Ireland) who have the most up-to-date and reliable information.  

We have also created some practical information for members which you may find helpful. 

What can you do to get ready, just in case? 

Handwashing & hygiene

Handwashing is one of the most effective ways to avoid catching and spreading the virus. Get PAs, family and friends visiting your home to get into the habit now of washing and drying their hands thoroughly when they come into your home, and before handling any food or drinks. You should also get into good, regular handwashing habits. Here is a video on how to do it properly: 



And a version to help younger children to learn handwashing skills if you are a parent/carer: 

The government advises washing your hands before eating, or before touching your face (particularly your mouth, nose and eyes). Cough or sneeze into a tissue, throw it and afterwards wash and dry your hands. We also advise washing and drying your hands: after travelling on public transport, after touching the handles of supermarket trolleys, after handling money, and before smoking/vaping. 

Increased handwashing may cause irritation to your skin, it may be worth getting some unscented hand lotion for sensitive skin to prevent this. 

This is a good visual guide on handwashing and hygiene produced by the BBC using NHS information: 


 
Planning ahead and stocking up 

You don’t need to panic buy but try stocking up so that you have 2 weeks’ worth of provisions just in case you are unwell and/or unable to leave the house for a while. This is a good idea anyway as there are other times when it might become difficult to get out to the shops, the shops may not have everything you like to buy, or you might be advised by your doctor to stay at home. Because of the developing coronavirus situation these have become more likely so it’s more important than usual to plan ahead. Here are some things you can think about buying in, it doesn’t have to be all at once, you can add a couple of extra things at a time to each shop you do: 

Food: 

You’ll want foods that keep: breakfast cereals, rice, pasta, lentils, tinned foods (beans, soups, veg, fish), oils, spices, sauces, condiments, tea, coffee, sugar, long-life fruit juice, dried fruit, nuts, seeds, spreads (honey, marmalade, marmite, peanut butter), powdered or UHT milk, frozen veg and fruit and other frozen foods. Bread can be frozen, a few slices in each packet, as can cheese and skimmed milk. Pet food & medicines if applicable. 

Toiletries: 

Soap, toothpaste, shampoo, sanitary products, alcohol gel (hand sanitiser), hand lotion. 

Medicine cabinet: 

Thermometer, paracetamol, ibuprofen, Dioralyte, vitamins & minerals, folic acid, any over-the-counter medicines you take regularly e.g. antihistamines.  

Household: 

Washing up liquid, bleach, surface cleaner, laundry detergent, bin bags, loo roll, tissues, batteries. Keep your car topped up with fuel. 

For parents of babies and/or young children:

If you are breast feeding it might be worth having some formula in case you/mum becomes ill. 

Talk to your pharmacist and GP surgery about having a prescription for extra supplies of medicines and catheters. 

Coronavirus can cause diarrhoea in some people, if this might cause extra problems for you, have a supply of pads and wipes at home. 

Care planning

If you have PAs care for you at home, think about how you’ll manage if they are unable to come. Do you have contact numbers of agencies, or friends/relatives who could help out? If you have family members helping out, think about how you would manage if they were unable to come. Do you have your local Social Services number handy?

Influenza vaccinations aka “flu jabs”

The influenza vaccine is not effective against coronavirus. However, it is still flu season so if you and your carers/person that you care for haven’t yet had a flu vaccination it is worth booking one now. It is free at your GPs or in pharmacies for at-risk people and their carers. It’s also available to the public for £8-13 in some pharmacies, including in bigger supermarkets.

While this vaccine doesn’t protect you against coronavirus it will protect you against seasonal flu and it is particularly important that you avoid respiratory illness at this time.  We recommend that you plan to have this vaccine every year during flu season, now is still a good time to start but usually we’d advise having it in October when the season starts. 

Getting healthy

There’s lots of claims being made online about various things being able to protect you from coronavirus but none of this is evidence based. The best things you can do are to try and stay as healthy as possible: moderate exercise, good sleep, and a healthy diet helps your immune system. We don’t know for sure whether smokers are at risk specifically from coronavirus but they are more likely to be hospitalised for flu. As coronavirus can affect the lungs now is an especially good time to try and quit smoking.  

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