Important News for MDS Patients: Government Update for the Extremely Vulnerable 12/07/2021

Following the announcement of the lifting in England of all COVID-19 restrictions from July 19th, the Government has issued new Guidance for people classed as Clinically Extremely Vulnerable (CEV), including all MDS patients.

The full Guidance can be found here:

Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19

However, we still advise MDS patients to take the same precautions as previously, until further specific advice from MDS experts (who we are currently consulting).

SO, at the very least:

  • continue to wear a mask
  • continue to socially distance
  • continue frequent hand washing

More lobbying is underway via the Blood Cancer Alliance (of which MDS UK is a member) to raise awareness of the situation for blood cancer patients. The following letter was recently sent to the Prime Minister, with a copy to the Secretary of State for Health and Social Care.

We would ask you to please forward this letter to your MP, with a statement about how this impacts YOU personally, as a person living with MDS:

Letter to the Prime Minister from the Blood Cancer Alliance

The full text of the revised Government Guidance:

Who this guidance is for

This guidance is for everyone in England who has been identified as clinically extremely vulnerable from coronavirus (COVID-19). This includes those people who have been identified by the NHS as being clinically extremely vulnerable and those identified through the COVID-19 Population Risk Assessment. All of those identified have been added to the Shielded Patient List, and more information on the criteria used is available below. If you have been identified as being clinically extremely vulnerable, you will previously have received a letter from the NHS or from your GP telling you this. You may also have been advised to shield in the past.

This guidance applies to clinically extremely vulnerable individuals only. Others living in a household with someone who is clinically extremely vulnerable are not advised to follow this guidance. They should instead follow the advice and restrictions that are in place for everyone in England.

There is different guidance for clinically extremely vulnerable people living in Scotland, living in Wales and living in Northern Ireland.

What has changed

Shielding is currently paused. Although the advice to shield has ended, clinically extremely vulnerable people must continue to follow the rules that are in place for everyone.

We are also advising clinically extremely vulnerable people to continue to take extra precautions to protect themselves. You are advised to follow the practical steps described below to minimise your risk of exposure to the virus.

Guidance on meeting family and friends has been updated, with a greater emphasis on personal responsibility. From 17 May, close contact with friends and family will be a personal choice, but you are encouraged to exercise caution. You should consider the guidance on risks associated with COVID-19 and actions you can take to help keep you and your loved ones safe. There is more information on meeting friends and family available.

Vaccination

Everyone on the Shielded Patient List should already have been offered a COVID-19 vaccine. If you have not yet received your first dose, please contact your GP or book your vaccination appointment online. If you have received your first dose, you should still ensure you take up your second dose of the vaccine when it is offered to you. Having two doses should further increase your level of protection.

For children aged 12 to 15 years, vaccination may be appropriate for those with severe neuro-disabilities. This option should be discussed between parents/guardians and the child’s clinician or GP. For other children aged 15 and under, whilst further research is being done, vaccination is not yet recommended.

No vaccine is 100% effective and therefore even if you have had both doses, there is still no absolute guarantee that you will not become ill from COVID-19. As such, you should continue to take the extra precautions set out in this guidance to help protect yourself.

Socialising inside and outside the home

Guidance on meeting friends and family has been updated for everyone. From 17 May 2021, if you are meeting friends and family (as a group of 6 people or 2 households indoors, or as a group of up to 30 people outdoors), you can make a personal choice on whether to socially distance within your own group. However, social distancing requirements continue to apply in the workplace, and in businesses and public venues. There is more information on meeting friends and family available.

As someone identified as clinically extremely vulnerable, it is important that you continue to be cautious when meeting others. You should think about the risk of catching or passing on COVID-19 both to yourself and to others before meeting people you do not live with. You can take steps to make meeting family and friends safer, such as:

  • meeting outside if possible, as the particles containing the virus that causes COVID-19 are quickly blown away which makes it less likely that they will be breathed in by another person
  • making sure the space is well ventilated if you meet inside; open windows and doors or take other action to let in plenty of fresh air. Please see the COVID-19: ventilation of indoor spaces guidance for more information
  • considering whether you and those you are meeting have been vaccinated – you might want to wait until 21 days after your second dose of a COVID-19 vaccine before being in close contact with others
  • working from home where possible
  • washing your hands regularly and avoid touching your face

You are encouraged to go outside for exercise and can do so with people from outside your household, subject to the wider rules on social contact. You can find tips and advice on staying active and eating healthily at NHS Better Health.

Try to reduce the amount of time you spend in settings where you are unable to maintain social distancing with people outside of your group, or where other people’s activities may reduce their likelihood of maintaining social distancing.

You can continue to form or maintain existing support bubbles if you are eligible.

You can find more information online about how to stop the spread of coronavirus.

Work

Everyone is currently advised to work from home where possible.

If you cannot work from home, we are no longer advising that you do not attend the workplace. Your employer is required to take steps to reduce the risk of exposure to COVID-19 in the workplace and should be able to explain to you the measures they have put in place to keep you safe at work. Some employers may introduce regular testing of employees as part of these measures. You may also want to consider how you get to and from work including if it is possible to avoid using public transport during rush hour.

Separate government guidance has been issued on how employers can make workplaces COVID-safe, including how they can maintain social distancing and a system of risk management in your workplace. The Health and Safety Executive (HSE) has also published guidance on protecting vulnerable workers, including advice for employers and employees on how to talk about reducing risks in the workplace.

If you need support to work at home or in the workplace you can apply for Access to Work. Access to Work may provide support for the disability-related extra costs of working that are beyond standard reasonable adjustments an employer must provide.

If you have access to occupational health and employee assistance programmes in the workplace, these services can also provide you with a range of health support and advice for your physical and mental health needs.

The Coronavirus Job Retention Scheme (furlough) has been extended until 30 September. You may continue to be eligible throughout this period, even when shielding is paused, providing your employer agrees. The Self-Employment Income Support Scheme (SEISS) has also been extended until 30 September.

From 1 April you will no longer be eligible for Statutory Sick Pay (SSP) or Employment and Support Allowance (ESA) on the basis of being advised to shield, given the lifting of shielding measures nationally. You may be eligible for SSP or ESA if you are sick or incapable of work, either due to coronavirus or other health reasons, subject to meeting the eligibility conditions.

If you have concerns about your health and safety at work then you can raise them with your workplace union, HSE or your local authority. Where employers are not managing the risk of COVID-19, HSE and local authorities will take action which can range from the provision of specific advice, issuing enforcement notices, stopping certain work practices until they are made safe and, where businesses fail to comply with enforcement notices, this could lead to prosecution.

The existing employment rights framework provides protections against discrimination, unfair dismissal and detriment. Specific guidance has been published for employers and workers on work absences due to coronavirus (COVID-19).

The Citizens Advice Bureau also has information about your rights at work and how to solve problems in the workplace. If you have concerns you can also get advice on your specific situation and your employment rights by visiting the Acas website or calling the Acas helpline on 0300 123 1100.

School, college and other educational settings

It is important that children attend school for their education, wellbeing, mental health and long-term development. Clinically extremely vulnerable pupils and students should have returned to their school or other educational setting. This includes early years provision, wraparound childcare and applicable out-of-school settings. Children who live in a household with someone who is clinically extremely vulnerable are not advised to shield and should have returned to school or college on 8 March.

Where parents are concerned about their child’s attendance, they should speak to their child’s school about their concerns and discuss the protective measures that have been put in place to reduce the risk. They should also discuss other measures that can be put in place to ensure their children can regularly attend school.

The use of rapid lateral flow tests allows us to identify individuals with coronavirus (COVID-19) who do not have symptoms, which make up around a third of all cases. Finding asymptomatic cases, along with other infection prevention and control measures such as social distancing, can help us manage the spread of the virus.

To safeguard the health of the teaching workforce and keep as many staff, pupils and students in school and college as possible, we have made rapid lateral flow tests available to schools and colleges. Lateral flow tests can also be accessed directly for households, childcare and support bubbles of primary and secondary school pupils and for households, childcare and support bubbles of primary and secondary school staff. This testing will also help keep safe those in the community who are clinically extremely vulnerable and their families.

All secondary schools and colleges are continuing to put in place a range of protective measures to help minimise the risk of spreading COVID-19. These include social distancing, handwashing, use of face coverings in specific situations, bubbles, enhancing cleaning, ventilation and managing confirmed cases.

All education settings have implemented a range of protective measures recommended by Public Health England (PHE) which, when followed, create an inherently safer environment for early years children, pupils, students, staff and families.

Travel

If you need to use public transport, you must wear a face covering unless you are exempt. Consider travelling outside peak hours to reduce the number of people with whom you come into contact.

If you do travel, walk or cycle if you can. For longer journeys, or if you are unable to walk or cycle, try to minimise the number of people you come into close contact with.

You may want to avoid car sharing with people from outside your household or support bubble, and ensure that you use a face covering when using taxis.

Going to shops and pharmacies

While you are not advised to avoid going to the shops, you may wish to continue using online delivery for food and essential shopping, or to ask family and friends for help. If you do go out to the shops or pharmacy, consider going at quieter times of the day. You must wear a face covering in all shops unless you are exempt.

If you have already registered for priority access to supermarket delivery slots using the Shielding Support website or through your council by 31 March, then we can confirm that the participating supermarkets will continue to offer priority access until 21 June. After this date individuals can continue to book deliveries from a supermarket.

You might still want to ask friends, family or volunteers to collect medicines for you. The NHS Volunteer Responders programme is still available to help support those who need it. Volunteers can collect and deliver shopping, medication and other essential supplies. Call 0808 196 3646 between 8am and 8pm, 7 days a week to self-refer or visit NHS Volunteer Responders for further information. There may also be other voluntary or community services in your local area that you can access for support.

If you require additional care and support

It is important that you continue to receive the care and support you need to help you stay safe and well. Providers of social care and medical services are making every effort to ensure services remain open and as safe as possible.

You should continue to seek support from the NHS for your existing health conditions. You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation. To find out more visit NHS Health at home, or download the NHS App. If you have an urgent medical need, call NHS 111 or, for a medical emergency, dial 999.

It is also important to look after your mental health. Go to the Every Mind Matters website for advice and practical steps that you can take to support your wellbeing and manage your mental health during this pandemic and beyond. The Let’s Talk Loneliness website also has a variety of tips, advice and further resources that you may find helpful.

If you or someone you care for experiences a mental health crisis, we urge you to make contact with a local health professional immediately. NHS Mental Health Trusts have established 24/7 telephone lines to support people of all ages to get the help they need, when they need it.

Any carers or visitors who support you with your everyday needs can continue to visit. They should continue to follow the guidance on how to stop the spread of COVID-19 at all times.

You can also access additional support from your energy supplier. Energy suppliers are required by the regulator, Ofgem, to hold a register of customers in a vulnerable circumstance, called a Priority Service Register. If you are clinically extremely vulnerable you can be added to this register. For information about how to be added to the register and the additional services your supplier can provide you, please visit Ofgem’s website.

Telecom providers are also required by their regulator, Ofcom, to support their vulnerable customers. For information about the additional services your supplier may be able to provide you as a vulnerable customer, please visit Ofcom’s website.

If you are struggling as a result of Coronavirus please visit www.gov.uk/find-coronavirus-support or contact your local council to find out what support is available.

Definition of clinically extremely vulnerable groups

People who are defined as clinically extremely vulnerable are thought to be at very high risk of serious illness from coronavirus. There are 3 ways you may be identified as clinically extremely vulnerable and therefore included on the Shielded Patient List:

  1. You have one or more of the conditions listed below.
  2. Your clinician or GP has added you to the Shielded Patient List because, based on their clinical judgement, they deem you to be at high risk of serious illness if you catch the virus.
  3. You have been identified through the COVID-19 Population Risk Assessment as potentially being at high risk of serious illness if you catch the virus.

If you do not fall into any of these categories, and have not been contacted to inform you that you are on the Shielded Patient List, follow the guidance for the rest of the population.

If you think there are good clinical reasons why you should be added to the Shielded Patient List, discuss your concerns with your GP or hospital clinician. People with the following conditions are automatically deemed clinically extremely vulnerable and therefore included on the Shielded Patient List:

  • solid organ transplant recipients
  • people with specific cancers:
    • people with cancer who are undergoing active chemotherapy
    • people with lung cancer who are undergoing radical radiotherapy
    • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
    • people having immunotherapy or other continuing antibody treatments for cancer
    • people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
    • people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
  • people with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
  • people with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
  • people on immunosuppression therapies sufficient to significantly increase risk of infection
  • problems with your spleen, for example splenectomy (having your spleen removed)
  • adults with Down’s syndrome
  • adults on dialysis or with chronic kidney disease (stage 5)
  • women who are pregnant with significant heart disease, congenital or acquired
  • other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions

Keep checking our website for news, and make sure you are registered as a member, and receiving our emails.

Any specific issues – please contact us, so we can report the problem to NHS England directly: info@mdspatientsupport.org.uk, or call 0207 733 7558.

MDS UK team

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