Let’s Talk About Blood Cancer

• Russell Cook
• Laura Feenan and Matthew Hall
• Vicky Blackshaw
• Robert Handy
• Hatti Kirby
• Ash Greenhalgh
• Emma Paine
• Declan Brady
• Jamie Ford
• Jess Richards
• Ash Greenhalgh
• Michael Fisher
• Emily Paterson
• Lucie Berwick
• Malcolm Stalker

Although all serious health conditions have a psychological impact, blood cancers present some specific challenges. Some of the treatments (such as Bone Marrow Transplants) are intensive and involve repeated hospital admissions and physical isolation due to risks of infection. Disruptions to life in the form of fatigue or graft versus host disease (GvHD, a condition where the donated bone marrow mistakes the person’s body as ‘foreign’ and attacks the host’s cells) can continue after treatment comes to an end. Lack of awareness can occasionally translate into a lack of understanding from caregivers or colleagues.

Helping patients cope emotionally

There is no fixed ‘template’ for coping with blood cancer that can be applied to all patients. Each individual’s response is a complex interplay of factors related to their illness (prognosis and treatment options) and personal/social factors (levels of practical and social support, previous experience of stressors, personality traits, and their existential or spiritual beliefs i.e. their thoughts about the meaning of life). Similarly, patient support needs don’t follow a specific timeline. Some people need support during the initial stages following diagnosis and others require support after the end of treatment.

Among a variety of emotions, a sense of loss can pervade the patient’s experience.

Although none of us has any guarantees about our futures, our natural human tendency is to have aspirations and make plans for the future. To an extent this sense of safety is necessary to participate in life and it can feel out-of-reach to someone diagnosed with a serious illness. With time, there may be a shift in this feeling but it is important to understand that this loss is felt very acutely by many people.

Patients often describe their journey as an ‘emotional rollercoaster’.

This metaphor feels accurate to describe the multiple physical and emotional adjustments patients (and carers) have to make. At the same time as processing thoughts and feelings associated with the diagnosis, patients have to face the practicalities of illness, including further investigations or treatment. The changes caused by side effects of treatment often have a profound effect on people’s sense of self or identity, and the personal and professional roles in which they have always viewed themselves.

Keeping friends and family informed can also be emotionally demanding.

Amidst all this, the picture of coping with a blood cancer can also include more positive emotions such as hope, or of gratitude towards loved ones and professionals.

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.

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

What has changed

Shielding advice was paused on 1 April 2021. If you require additional care and support to help you stay safe and well, there is further advice below.

As restrictions have been eased following the move to Step 4 of the roadmap, we are advising clinically extremely vulnerable people, as a minimum, to follow the same guidance as everyone else. It is important that everyone adheres to this guidance.

However, as someone who is at a higher risk of becoming seriously ill if you were to catch COVID-19, you may wish to think particularly carefully about additional precautions you might wish to continue to take. Individuals may choose to limit the close contact they have with those they do not usually meet with in order to reduce the risk of catching or spreading COVID-19, particularly if they are clinically extremely vulnerable and if COVID-19 disease levels in the general community are high. It is important to respect and be considerate of those who may wish to take a more cautious approach as restrictions are lifted.

We understand you may have concerns and wish to know how you can continue to take precautions to keep yourself safe. There are things that you can continue to do to lower your risk of infection and prevent the spread of COVID-19, and some examples are outlined in the sections below.

Although the vast majority of the population, including the clinically extremely vulnerable, will be well protected by the vaccine, no vaccine is 100% effective and there is emerging evidence that suggests that some immunocompromised and immunosuppressed individuals may not respond as well to COVID-19 vaccines as others. However, all COVID-19 vaccines should offer some degree of protection. Therefore, it is really important that you have both your first and second dose of the coronavirus vaccine.

A recent study from Public Health England (PHE), which looked at more than 1 million people in at-risk groups, found that people who are immunosuppressed are significantly better protected from symptomatic infection following the second dose of a COVID-19 vaccine.

We are continuing to work to better understand who is less well protected by the COVID-19 vaccines, and there are various studies underway that are looking at this.

If you have any questions or concerns about what it means to be clinically extremely vulnerable and how COVID-19 may impact your health condition, have a look at the NHS website.

If you are concerned about your general physical and mental wellbeing or if you are immunocompromised or immunosuppressed and have any concerns about what this means for you, then please contact your GP practice or specialist who can provide you with support and guidance on any further measures you can take to further reduce your risk of infection.

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, book your vaccination appointment online or call 119. If you have received your first dose, you should still ensure you take up your second dose of the vaccine. Having 2 doses should further increase your level of protection. For some with immunosuppression it may only be with your second dose that a significant immune response is triggered.

The Joint Committee on Vaccination and Immunisation (JCVI) interim advice, based on existing evidence, is to offer COVID-19 booster vaccines to the most vulnerable, starting from September 2021. The booster programme will aim to provide additional resilience against variants, and maximise protection in those who are the most vulnerable to serious disease from COVID-19 ahead of the winter months, when there is increased pressure on the NHS as non-COVID-19 emergency demand is at its highest.

A booster dose would be offered to groups in 2 stages and, if possible, delivered alongside the annual influenza vaccination. In the first stage, a booster would be offered to:

• adults aged 16 years and over who are immunosuppressed
• those living in residential care homes for older adults
• all adults aged 70 years or over
• adults aged 16 years and over who are considered clinically extremely vulnerable
• frontline health and social care workers

As soon as practicable after the first stage, the second stage would see a booster offered to:

• all adults aged 50 years and over
• adults aged 16 to 49 years who are in an influenza or COVID-19 at-risk group
• adult household contacts of immunosuppressed individuals

Further details of any booster campaign, including when, for whom and which vaccine(s) would be used, will become available once the JCVI has considered further evidence and made its final recommendations.

Children under 16 years of age, even if they are clinically extremely vulnerable, are at low risk of serious illness and death from COVID-19 and are not routinely recommended for vaccination. However, the JCVI has advised that the following groups of children should be offered vaccination against COVID-19:

• 12 to 15 year olds with the following health conditions:
  • severe neuro-disabilities
  • Down’s syndrome
  • underlying conditions resulting in immunosuppression
  • those with profound and multiple learning disabilities, severe learning disabilities or who are on the learning disability register
• 12 to 17 year olds who are healthy, but who live with individuals (adults or children) who are immunosuppressed

All 16 and 17 year olds who are either clinically extremely vulnerable or have underlying health conditions were included in Phase One of the vaccine deployment programme, and should therefore already have been offered a COVID-19 vaccine.

The NHS will contact eligible children to invite them for vaccination. If a parent or guardian thinks that their child is eligible but has not been contacted by the end of August, they should contact their GP.

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 follow the guidance that is in place for everyone.

Socialising inside and outside the home

We recognise that restrictions on socialising with friends and family have been difficult for everyone, especially for clinically extremely vulnerable people during periods of shielding. Guidance on socialising inside and outside of the home with your friends and family has been updated for everyone. From 19 July, there are no longer any limits on the number of people or households that you can meet with. In addition, the requirement to socially distance from others has ended, other than in a few exceptions.

Social distancing rules (2 metres or 1 metre with additional mitigations) have been lifted. You should continue to consider the risks of close contact with others, particularly if you are clinically extremely vulnerable or not yet fully vaccinated. The risk of catching or passing on COVID-19 is generally higher:

• in crowded spaces, where there are more people who might be infectious
• in enclosed indoor spaces where there is limited fresh air
• when COVID-19 disease levels are high in the general community

Everyone will only be required to socially distance in limited circumstances, such as maintaining infection control in health and care settings.

As someone identified as clinically extremely vulnerable, we acknowledge that social distancing has been particularly difficult for you, especially during periods of shielding. Because clinically extremely vulnerable people are at higher risk of severe illness from COVID-19, you may wish to think particularly carefully about taking precautions when meeting others you do not usually meet with in order to reduce the risk of catching or spreading COVID-19. For example, you could:

• meet outside if possible – 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
• make 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
• consider whether you and those you are meeting have been vaccinated – you might want to wait until 14 days after everyone’s second dose of a COVID-19 vaccine before being in close contact with others
• wash your hands regularly and avoid touching your face
• consider continuing to practice social distancing if that feels right for you and your friends
• asking friends and family to take a lateral flow test before visiting you
• ask home visitors to wear face coverings

You are encouraged to go outside for exercise and can do so freely now. You can find tips and advice on staying active and eating healthily at NHS Better Health. You can find more information online about how to stop the spread of coronavirus.

Work

From 19 July, social distancing measures have ended in the workplace and it is no longer necessary for the government to instruct people to work from home.

However, employers still have a legal responsibility to protect their employees and others from risks to their health and safety. Your employer should be able to explain to you the measures they have in place to keep you safe at work. Some employers may request employees to undertake regular testing for COVID-19 to identify people who are asymptomatic.

The Health and Safety Executive (HSE) has 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. Access to Work will prioritise applications from disabled people who are in the clinically extremely vulnerable group.

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) is available until 30 September. You may be eligible throughout this period, even when shielding is paused, providing your employer agrees. The Self-Employment Income Support Scheme (SEISS) is also available until 30 September.

You may be eligible for Statutory Sick Pay (SSP) or Employment and Support Allowance (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).

Citizens Advice 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.

Where parents are concerned about their child’s attendance, they should speak to their child’s educational setting about their concerns and discuss the 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.

The use of rapid lateral flow tests helps us to identify individuals with 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 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 of primary and secondary school pupils and for households 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 early years providers, schools and colleges are continuing to put in place measures to help minimise the risk of spreading COVID-19. These include handwashing, use of face coverings in specific situations, enhancing cleaning, ventilation and managing suspected and confirmed cases.

Travel

Whilst the legal requirement to wear a face covering has been lifted from 19 July, the government expects and recommends that people continue to wear face coverings in crowded areas, such as public transport. Wearing a face covering, especially when there is close contact between people in enclosed and crowded spaces will still help to reduce the risk of spreading COVID-19. It may also help those who are clinically extremely vulnerable feel more relaxed. It is important that face coverings fit securely around the face and safely cover the mouth and the nose.

ar 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

Clinically extremely vulnerable people are now advised to follow the guidance that applies to the rest of the population. You may still wish to consider going to the shops and pharmacy at quieter times of the day.

Priority access to supermarket delivery slots using the shielding support website ended on 21 June. After 21 June, you can continue to book delivery slots in the usual manner from a supermarket.

You can continue to ask for short-term help from the NHS Volunteer Responder scheme with telephone support if you are feeling lonely, or for help with collecting shopping (if you are unable to use any of the online or telephone shopping options now available through most supermarkets), medication or other essential supplies that you need delivered to your home. You can ask for help by visiting NHS Volunteer Responders or calling 08081963646 between 8am and 8pm.

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.

The measures you may have taken to respond to COVID-19 may have triggered feelings of worry, distress or loneliness. These feelings are a completely normal response to an unprecedented period of disruption. As restrictions ease and the economy is gradually and safely reopened, you may find that your wellbeing improves as you reconnect with family and friends, and return to routines and activities that help to keep you well.

You can visit the Every Mind Matters website for advice and practical steps that you can take to support your wellbeing and manage your mental health. If you are feeling lonely, the Let’s Talk Loneliness website also has a variety of tips, advice and further resources that you may find helpful. The NHS Volunteer Responders programme also offers telephone support through Check in and Chat Volunteers. Check In and Chat Plus Volunteers provide a regular check-in by telephone to you for up to 10 weeks, with typically 3 calls taking place each week.

If you are struggling with your mental health, you can reach out for support. Visit the Hub of Hope to find local sources of mental health support and services, both from the NHS and from other organisations close to you. Your GP will be able to refer you to NHS talking therapies, which can provide treatment for depression, anxiety or post-traumatic stress disorder, or you can self-refer online.

If you or a loved one are experiencing a mental health crisis, you can call a local NHS mental health helpline for 24-hour advice and support, or contact the Samaritans on 116 123 or through emailing jo@samaritans.org

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, find out how to get 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, you should continue to follow the guidance that applies to everyone.

If you think there are good clinical reasons why you should be considered clinically extremely vulnerable, discuss your concerns with your GP or hospital clinician. People with the following conditions are automatically deemed clinically extremely vulnerable and therefore have been previously 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

The British Society of Haematology has now issued their 2021 updated Guidelines for Myelodysplastic Syndromes (MDS).

These guidelines are written by experts in MDS and destined to be used by all UK haematologists to assist in the optimal care and treatment of their MDS patients.

These are guidelines, not rules, and the clinicians will adapt these to care for individual patients, depending on their exact sub-type, co-morbidities, circumstances and patient wishes.

Patients and families can of course read these guidelines, but remember these are not written for an audience of patients.

As patients or carers, we recommend you read our Patient Handbook, or browse articles and videos on our website, which are less technical. We will be reflecting these updates in our next edition of the patient handbook, due out in October 2021.

After contacting MDS UK, Simon decided to fundraise for us, as well as Anthony Nolan, saving the lives of people with blood cancer, to raise awareness of his blood cancer, and the need for more stem cell donors.

Simon organised several recruitment drives over the years, registering numerous donors, including Sam Astley.
Simon's life was very sadly turned upside down, following the death of his son. Simon and his family heve been holding events in his memory, supporting both MDS UK and Anthony Nolan.

We have since heard that Sam was given tickets by EUFA2020 to watch the final! England football team Huge thank you on behalf of the blood cancer community!

And thanks to Simon for all his support.
https://www.bbc.co.uk/news