GENERAL

According to the World Health Organisation, the Coronavirus disease (COVID-19) is an infectious respiratory disease caused by a newly discovered coronavirus. 

Everyone who comes into contact with the coronavirus can become infected by it.  These include members of the family of the child or young person diagnosed with a brain tumours, who are below 75years and have not been diagnosed with serious underlying medical problems.  Older members of the family, and those with underlying medical problems like cardiovascular disease, diabetes, chronic respiratory disease, and cancer are more likely to develop serious illness.  According to the World Health Organisation, the best way to prevent and slow down transmission is to be well informed about the COVID-19 virus, the disease it causes and how it spreads.  Please continue to protect yourself and other members of your family from infection by washing your hands or using an alcohol based rub frequently and not touching your face. 

The World Health Organisation also advises that the COVID-19 virus spreads primarily through droplets of saliva or discharge from the nose when an infected person coughs or sneezes, so it’s important that family members of the child or young person diagnosed with a brain tumour, continue to practice good respiratory etiquette (for example, by coughing into a flexed elbow, a disposable tissue and disposing of the used tissue carefully).  Please click here for the latest NHS information and advice about the Coronavirus and more.

Our research has shown that the COVID-19 (Coronavirus) pandemic has unfairly impacted Children and Young People diagnosed with brain tumours and their families.  For many children, clinical care has been de-prioritised to enable the NHS prioritise its COVID response, meet the extremely high demand COVID-19 related illnesses have placed on its healthcare services, focus treat and resources on patients who are critically ill and facing imminent threat to their lives from COVID-19 and protect its staff.  These strict COVID-19 restrictions are essential to protect the NHS but also mean there is a limit on the number of people from one family who can visit a hospital and accompany their child or young person diagnosed with a brain tumour to receive clinical care or treatment.  This is a very stressful and worrying experience for children and families already dealing with a serious life changing illness like a brain tumour diagnosis.

Childhood brain tumours are complex neurological diseases that affect the child's brain and central nervous system.  These are very specialist parts of the body, that control many of the body's major and minor functions including the immune system and how well the body protects itself and fights off new infections like the coronavirus.  In many children, the location of the tumour in the brain, how the tumour grows and behaves towards the other cells around it, can affect the normal functioning of the cells in that area, the brain and overall central nervous system.  This change may include a reduction in how well immune cells send signals to other cells and how well these immune cells can protect or defend the body from infections.  This can become a serious risk for children with brain tumours/cancers and decrease their chances of coping with new infections (read the latest coronavirus advice from Children with Cancer UK).  To reduce the risk of transmission and protect children undergoing cancer treatment from new infections like COVID19, it may become necessary for their doctors to place them in special quarantine or encourage stricter shielding at home.   

Many of our families have told us that whilst they are very grateful for this measure, they find themselves living in constant fear and anxiety of the possibility of their children catching the COVID19 virus.  They are continuously distressed by the thought of not knowing whether their child will catch the COVID19 infection and if they do, whether they will be able to fight off the infection or not.  This uncertainty is unbearable and can be emotionally and mentally crippling.  Many children and their families are afraid to go out and if they do go out, become seriously stressed by being out in the open.  Many are children come from single parent households with no domestic support and their means of livelihood, food supply and practical support is severely restricted.  Many feel cut off from their communities as they focus primarily on keeping their children safe and well.  Please help us reach more families in Hillingdon and North West London to provide more practical support where they need it.

We would encourage all our families to work closely with their child's healthcare professionals to adhere to these special conditions as much as possible.  This measure is necessary to help reduce the child's contact with people from outside their home or care bubble and protect their children from greater exposure to COVID19 from outside sources.  Please click here to read the latest coronavirus guidance from Cancer Research UK and click here for the latest Coronavirus advice to parents from Together for Short Lives.

Our research has shown that the COVID-19 (Coronavirus) pandemic has unfairly impacted Children and Young People diagnosed with brain tumours and their families; particularly those from the Black Asian and Minority Ethnic (BAME) and migrant communities.  Many of the families from these communities, may have lower incomes, are key workers and struggle with flexibility at work.  With the pressure of Covid-19 on employment, many are either on furlough, uncertain of their future work prospects or out of work entirely.  This has led to greater financial pressures, poorer outcomes & there has been an increase in the demand for the local Foodbank support and people reaching out for social welfare support.   For some of these families, English is their second language and this presents a immediate communication barrier when accessing the right care and support for their children at the time they need it.  We have found that our children and families from the BAME communities, silently struggle with the greater wellbeing distress that Covid19 has introduced into their lives due to cultural stigmas, feel more nervous to attend appointments independently, lack the confidence in engaging with their child's medical teams and struggle to cope with their child's care responsibilities.  Without wellbeing support they are more likely to remain reticent in accessing the social/healthcare support their children need at the right time.  Please click here to read the latest report from the NHS Confederation on the impact of COVID19 on BME communities and Health and Care staff.  You can also click here if you would to read the government report on the impact of COVID19 on the BAME community.

Faith remains an important part of many people's lives particularly in a health crisis and presently through this COVID19 pandemic.  Our research has shown that the Coronavirus) pandemic has unfairly impacted Children and Young People diagnosed with brain tumours and their families; particularly those from the faith communities.  One of the biggest impacts of the coronavirus on the faith community, has been the closure of many places of worship for health and safety reasons, and the need to reduce the risk of transmission from large public gatherings.  For many children and families from a faith background, they have told us that this closure, has left them feeling cut off from their community and faith support circles.  Till date many have relied on this faith support as a spiritual life-line to strengthen their beliefs and meaning-of-life and a way of coping with life in spite of their diagnosis.  For children from lower economic households, this is particularly distressing as they do not readily have access to laptops or computers and will feel even more cut off from virtual faith support or resources.  Whilst the interim lockdown is a health and safety priority, many children, young people and their families have told us that the lack of face-to-face / person-to-person contact leaves them feeling socially withdrawn, discouraged and demotivated from pursuing their faiths and growing spiritually.  Many parents have also shared their concerns around the lack of this faith support in the overall development of their children.  Many parents within and without the faith communities have also told us that they are seeing an increase in behavioural challenges in their children, feared to be linked to the wellbeing stress of remaining in a confined space for the prolonged periods we have seen in the recent lockdowns.   Please click here to the latest information from the Social Care Institute for Excellence.