Shine news

Covid 19 (Coronavirus) - Information for Shine Members: April 2020

1st April 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.

Shine's services

Our archived updates on Covid-19 (Coronavirus) from April 2020 can be found below - to view the most recent updates click here.

COVID-19 (Coronavirus)

29th April 2020

There have been recent reports of a very small number of children admitted to hospital with a sudden, severe illness. This may be a rare complication of coronavirus, although nobody is sure at the moment.

The illness presents as similar to toxic shock syndrome, and involves severe inflammation of many different organs. The RCPCH (Paediatricians) strongly advise you to call 999 or go to A&E if you notice your child: 

  • Becoming pale, mottled and feeling abnormally cold to the touch 
  • Has pauses in their breathing, irregular breathing, or starts grunting 
  • Has severe difficulty in breathing becoming agitated or unresponsive 
  • Is going blue round the lips Has a seizure (unless part of their usual condition) 
  • Becomes extremely distressed, confused, very lethargic (difficult to wake) or unresponsive 
  • Develops a rash that does not disappear with pressure (the 'Glass test') 
  • Has pain in the testes, especially in teenage boys 

If your child becomes very unwell in any other way, such as suspected shunt malfunction, you should still seek medical attention quickly, don't delay through fear of coronavirus. 

 

20th April 2020

More ways to find help and get support 

Some important developments for accessing help and support have been made available: 

The Royal Voluntary Service now have a referral/request form to get help from all those amazing NHS volunteers, it’s available here. 

You can request four different kinds of help: 

  • Check in and Chat Support: Provides short-term telephone support to individuals who are at risk of loneliness as a consequence of self-isolation. 
  • Community Support: Provides collection of shopping, medication or other essential supplies for someone who is self-isolating, and delivering these supplies to their home. 
  • Patient Transport Support: Provides transport to take patients home who are medically fit for discharge. 
  • NHS Transport Support: Provides transport for equipment, supplies and/or medication between NHS services and sites. Also involves assisting pharmacies with medication delivery. 

The government have created an information service to find out what help you can get if you’re affected by coronavirus. It is available here.

You’re not able to get direct support from the government or other organisations through this service but it is useful for information and signposting. 

You can find information about: feeling unsafe; going to work; paying bills; unemployment; getting food; having somewhere to live; mental health and wellbeing. 

Getting medical help  

Hospitals have reported people arriving very late on in medical emergencies due to their reluctance to go into healthcare settings, as a result these patients are much more seriously ill/injured and much harder to treat. We know the prospect of going to the doctor’s surgery or to a hospital at the minute is quite frightening, but it is extremely important to get medical help if you need it. This NHS guide explains when and how to use different healthcare services during the coronavirus outbreak. And this guide for parents is designed to help make healthcare decisions.

The guide mentions “special healthcare needs and a plan that tells you to go to A&E”, this would include suspected shunt malfunctions. Shunt malfunctions are medical emergencies and if your child/you are experiencing signs or symptoms of a malfunctioning shunt it is important to follow the normal procedure and go to A&E.      

Access cash through a trusted friend if or helper if you can’t leave your house 

If you need cash but are unable to leave your home you are now able to ask a trusted friend or volunteer to withdraw cash at any Post Office for you using a single-use Payout NOW! voucher.

You tell your bank how much you want to withdraw from your account, and you’ll be sent a code via text, email or post that will allow a family member, trusted friend or volunteer to collect it on your behalf in exchange for the voucher code. This enables people who are shielding or self-isolating, to access cash without needing to give a debit card and PIN to somebody else.  
 
Getting groceries 

Morrisons and Marks and Spencer have some grocery boxes that you can order that have much more delivery availability than full grocery shops.  They’re available here:  

Wiltshire Farm Foods provide nutritious ready meals at reasonable prices so if you’re struggling with preparing meals they may be a helpful alternative. 

Local fruit and veg boxes may be available in your area too providing fresh, local produce direct to your door. Search online to see what’s available near you. 
  
Campaign to improve grocery access 

We will continue to work hard to make sure you can access essential food and support during this time. Together with 23 other charities we’ve written to the Government and supermarkets about the challenges many of you are facing accessing food during the coronavirus crisis. We’re urgently calling for: 

  1. Supermarkets to make sure everyone with a disability, those at increased risk of CV19 and unpaid carers get priority access to supermarkets and home deliveries of food. 
  2. Government to work with us to make sure no one misses out on the support they need. 
  3. Government to provide information about the help available for people struggling to access food.  
  4. Supermarkets to make their services more accessible for older, disabled people and their unpaid carers.  
     

Mental health support 

Public Health England have launched a new campaign to support people's mental health and wellbeing during the coronavirus crisis using their Every Mind Matters resources. Here you can find fantastic advice and information.
 
Facebook Live sessions 

To help support you during the coronavirus situation we will be launching new Facebook Live information and Q&A sessions. These will be hosted on the main Shine Facebook Page and will feature two or three Shine specialists in each session, sharing information and answering your questions.

We will be collecting as many questions as possible in advance so please send us your questions by commenting on the Facebook posts advertising the dates or send them to Shine's Facebook messenger.

The first series is as follows: 

April 

  • Thursday 23rd 3pm - Coronavirus – Your questions answered by the Health Team (adult members) 
  • Wednesday 29th 2pm - Life Under Lockdown, coping with isolation (adult members)  
  • Thursday 30th 3pm - Coronavirus – Your questions answered by the Health Team (adult members) 
     

May 

  • Tuesday 5th 11am - Messy and sensory play ideas (parents of children 0-10) 
  • Thursday 7th 3pm - Coronavirus: Your questions answered by the Health Team (adult members) 
  • Tuesday 12th 11am - Bladders, Bowels and child health (parents of 0-10s)  
  • Tuesday 12th 2pm - Your benefits questions (adult members)   
  • Wednesday 13th 2pm - Life under lockdown, coping with isolation (adult members)  
  • Thursday 14th 3pm - Coronavirus:  Your questions answered by the Health Team (adult members)  
  • Wednesday 20th 2pm - Life Under Lockdown, coping with isolation (adult members) 
  • Thursday 21st 11am - Your physio and development questions (parents of children 0-5) 
  • Thursday 21st 3pm - Coronavirus – Your questions answered by the Health Team (adult members)    
  • Wednesday 27th 2pm - Life under lockdown, coping with isolation (adult members)  
  • Thursday 28th 3pm - Health & coronavirus Q&A (everyone) 

These sessions may run for up to an hour or in some cases an hour and a half, however, if we have less questions we will finish early so please try to join us from the start. 

 

9th April 2020

Getting medical help at home 

We know many people feel anxious about entering healthcare settings at the minute, but it is very important to get medical help if you need it. Wherever possible try to avoid getting help face-to-face. This NHS guide explains when and how to use different healthcare services during the coronavirus outbreak.

Care continuity 

If you receive or provide care in your home you should make a plan for what to do in case that care could not be provided e.g. due to sickness. Ideally try to find someone you know and trust to help e.g. family, friends, neighbours. 
 
The government have provided guidance to those who provide informal care here.
 
Carers can register with emergency schemes and get specialist help in making emergency plans. The schemes offer a 24-hour service and are run by councils, trusts or carers centres. They go by different names including emergency care scheme, carer card scheme, and carers emergency card. Many of them are listed in this directory and you can find your local authority here. Emergency care card schemes hold copies of agreed emergency care plans which are identified by unique ID numbers. Carers will be given a card with the scheme’s phone number and the care plan ID number so the card itself contains no personal information but it can be accessed by phone.  
 
Care plans usually contain the following information:  

  • Name, address and phone/email contact details of the person needing care 
  • Who should be contacted in an emergency: family/friends/neighbours/professionals 
  • Ongoing treatment and medication details (what, how much, where it’s stored) 
  • Allergies 
  • Mobility, including details of necessary aids e.g. wheelchair/hoist/rota stand  
  • GP & Pharmacy details 
  • Care and support services received 
  • Continence products needed and details of supplier 
  • Behavioural issues that other people would need to know about  

Carers UK also have an app that can help carers to communicate and share information about needs and care provision with each other: The Jointly app
 
Getting your groceries and preparing meals 

Scope have produced some fantastic information about getting in groceries and other essentials during the coronavirus situation, it is available here.

You may find yourself needing to cook more and with different ingredients than you wouldn’t normally use. For ideas and instructions you could try these websites: 

Caring responsibilities and working 

If you can't work because you are caring for your child or are shielding a vulnerable person in your household, you should now be able to get 80% of your wages paid via the Coronavirus Job Retention Scheme. The government has clarified that employees who are unable to work due to caring responsibilities can be furloughed by their employer. The revised guidance is available on the gov.uk website

Money matters 

With so much disruption to daily life and work, many people are worried about how this will affect their finances and benefits. Information is available from the money advice service and Shine can provide information and support about benefits applications. 
 
Beware scams 

Unfortunately, scamming reports are increasing due to coronavirus-related fraud. There have been reports of various scams where people try to get money and personal information by impersonating representatives of the government and organisations such as Public Health England. They can be very convincing so please be very careful about sharing details. If you have any doubts or concerns, don’t share anything and take time to check they are genuine. No bank, government organisation or other company/charity would ever ask for your bank details, card numbers, passwords, CVC number or Pin codes under any circumstances. Which have more information on different scams and how to spot them available here.

Scams have also appeared attempting to sell bogus coronavirus tests, medications and vaccines. It’s important to report these if you find them: 

(Click on the image to enlarge it) 

 

Look after your mental health 

The coronavirus situation is affecting the way we live and feel. It’s normal to find this difficult and distressing but it’s important to do things to protect your mental health. There is fantastic information available from these sources: 

Shielding text messages 

Some members who are shielding (or who care for those that are) have received text messages with wording that has caused alarm because it says that you “should not go outside your property”. Understandably people are concerned about whether this means they cannot go into their gardens on out on balconies. The government website makes it clearer that property would include any private outside space. They actively recommend “spending time with the windows open to let in the fresh air, arranging space to sit and see a nice view (if possible) and get some natural sunlight, or get out into any private space, keeping at least 2 metres away from your neighbours and household members if you are sitting on your doorstep". 
 
Help the coronavirus response: take part in research 

If you’d like to do more to help out during the coronavirus situation there are different research projects that you can get involved in that will really help in monitoring and managing the national situation: 

  • The University College London Covid-19 Social Study is looking into the psychological and social experiences of adults in the UK during the coronavirus outbreak. For more information and to take part, go here.  
  • The NHS is monitoring people’s status and symptoms here to help plan their response. 
  • Kings College London are using an app to monitor the spread of coronavirus around the UK here. 
  • Carers’ UK want to understand what impact this national crisis is having on people’s lives to help shape the advice and support they provide, and also ensure that local and national government hear directly from carers about how current circumstances are affecting them here.

 

8th April 2020

Update for parents 

This is a difficult time for many but help, support, and information are available from so many avenues. We will keep sharing the most reliable and most useful information with you here.  

Parenting 
 
The WHO and UNICEF have both produced some excellent resources about parenting during the coronavirus crisis:  

Healthcare decisions 

Hospitals have reported people presenting very late on in medical emergencies due to reluctance to go into healthcare settings. They have produced this information to help you decide what the right thing to do is in different situations:  

(Click on the image to enlarge it)

  


Caring responsibilities and working 

If you can't work because you are caring for your child or are shielding a vulnerable person in your household, you should now be able to get 80% of your wages paid via the Coronavirus Job Retention Scheme. The government has clarified that employees who are unable to work due to caring responsibilities can be furloughed by their employer. The revised guidance is available on the gov.uk website

Mental health support 

Statutory assessments, EHCPs, and Annual Reviews  

Local Authorities are starting to issue guidance on statutory assessments, Education, Health and Care Plans and Annual Reviews. Here is one that has been produced by Ealing but contains lots of general, relevant information.
 
Physiotherapy 

Bumble Bee Physiotherapy has been producing fantastic videos to help support your child’s physical needs and development. Her website can be found here. She regularly posts videos on her Facebook page which can be found here
 
Shielding text messages 

Some members who are shielding (or who care for those that are) have received text messages with wording that has caused alarm because it says that you “should not go outside your property”.

Understandably people are concerned about whether this means they cannot go into their gardens on out on balconies. The government website makes it clearer that property would include any private outside space. They actively recommend “spending time with the windows open to let in the fresh air, arranging space to sit and see a nice view (if possible) and get some natural sunlight, or get out into any private space, keeping at least 2 metres away from your neighbours and household members if you are sitting on your doorstep".  

 

2nd April 2020

We’ve identified a few areas of particular concern for members at the moment and have provided some information below.

Grocery shopping

If you are able to visit a supermarket (i.e. you are not extremely vulnerable or self-isolating) then you can do so but you must take care to keep 2 meters (6 feet) away from other customers and make sure to keep your hands clean. The inews website has information about the opening hours of the major supermarket chains.

Sainsburys has a vulnerable person’s careline - 0800 052 5500. They are trying to prioritise vulnerable customers for home delivery but be aware that the waiting times are long as the lines are very busy at the moment.

If you use online shopping but are not eligible for the delivery slots that have been allocated to the vulnerable by many supermarkets, you can still use Tesco. New Tesco delivery slots are released every day at midnight, it’s best to have your online basket full and ready to go as the slots go quickly and you can end up in a virtual queue. You can always checkout as soon as you have a slot then come back and finish your shop later when the website is less busy.

If you are alone and struggling, get in touch with your council as many have set up support hubs to help those in the community who need additional help.

Many people are having significant problems getting home deliveries of food and other essentials. At the minute having a disability does not necessarily make you eligible for priority deliveries as vulnerability is assessed in terms of coronavirus risk. We are joining other charities in asking supermarkets and the government to widen their eligibility criteria for priority deliveries and include other circumstances of vulnerability such as disability.  

If you are able to use online banking with confidence, but need someone to shop for you, a prepaid debit card might be useful. Revolut has an account with it,  Pockit is a standalone card. You can transfer money to the card, and if it’s spent, you get a phone notification instantly. By transferring just enough for your needs, you can save the worry of having to give your debit card to other people or leave the house to get cash. Like any financial services, Shine are not endorsing these in any way. Do read the terms carefully to check this is the right product for you, and look through reviews to see how others have found it.

Care

If you have PAs care for you at home, think about and discuss with them 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, plan how you would manage if they were unable to come. Contact your local council or social services to let them know if you are having difficulties or think you would be at risk of difficulties due to your care situation. You can contact Shine if you need some help with this.

In England if you are extremely vulnerable you can register yourself for support on the government website here.

There is currently no system for registration in Wales and Northern Ireland so members in Wales should contact your local authority and members in Northern Ireland should contact your local council.   Call them and let them know about your situation and find out what they can do to help while you are well.

Your local Community Voluntary Service in England, County Voluntary Council in Wales and NICVA in Northern Ireland will also have a list of local support services.

Hospital admissions

A Hospital Passport is a document that helps doctors and nurses to care for you if you are admitted to hospital. It contains information about you beyond just illness and health and helps the hospital staff know how to make you feel comfortable. If you would like help making or filling in a hospital passport call Shine and we will help you with this.

You can download a hospital passport here.  Keep a copy printed off at home in case you need new carers at any time who haven’t previously supported you or your loved ones. You will also need a spare copy as you may not be able to bring back the one you take into hospital at the moment to prevent coronavirus spread.

Related Stories

Donate Become a member