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Forgotten Families : Living under Lockdown

Families with children who have life-limiting, life-threatening and terminal illnesses feel more isolated than ever under lockdown, a new study by a hospice charity reveals.

Undertaken by the charity Together for Short Lives, and launched in Children’s Hospice Week, in collaboration with Martin House Research Centre and the University of Southampton, this new study reveals that most families caring for a child with a life-limiting condition have felt even more isolated and alone than normal during the Coronavirus pandemic, with some parents describing that they feel like a “forgotten group”.

The study found that:

  • 93% of families felt isolated during the pandemic
  • 57% said isolation has brought up negative memories
  • 95% are fearful that their child will catch the virus from their parent
  • 93% fear their child’s treatment will be cancelled or delayed.
  • Families are missing out on vital care and support for their child while many services are still suspended.

In response, they’ve called on government to continue to provide support for isolated families of seriously ill children who will understandably be anxious about ending shielding and to begin to restart urgent local education, health and care services.

We have been abiding by the shielding letter and have not left our home not even for a walk for three months now. As you can imagine this has been incredibly difficult for us. (Family taking part in the study)

Feelings of isolation were heightened for several reasons, including the need to shield their child at home, worries about carers coming into their home and the loss of some of their formal and informal support.

The SHARE study is a collaboration between The Martin House Research Centre, Together for Short Lives, and the University of Southampton. The survey was completed by parents, with the majority (77%) completed by mothers. Around 82% of families taking part are supported by their local children’s hospice. So far, 44 parents have taken part.

For families caring for seriously ill children, feelings of isolation and loneliness are already very common, but the coronavirus pandemic has intensified this. Many parents, exhausted after months of providing 24/7 care for their child at home, may choose to carry on shielding their child and family long after social distancing ends because they are extremely nervous about the impact that contracting COVID-19 could have on their household. The SHARE study reveals negative impacts on the wellbeing of the seriously ill child, the parent and other family members. Parents reporting getting few breaks from caring and no ability to engage in activities that have previously helped them to cope, such as going out for a walk, to the shops, or seeing friends.

We are exhausted. My partner and I are doing a job that usually takes a whole team of people. Our relationship with each other has deteriorated. My child is bored, upset and confused. He is in pain as his surgery has been delayed and he cannot have his usual therapy. His learning has stopped and he has regressed without the 1:1 he usually has. My other children have had to stay indoors due to shielding my life limited child. They are generally coping well but have some emotionally challenging days. (Family taking part in the study)

Although some parents reported positive impacts such as spending more time together as a family and life slowing down, most parents reported feeling physically and emotionally exhausted. And parents’ worries and fears about the virus are also impacting on their wellbeing.

We have always known that even the common cold could cause our child a hospital stay and ventilation. This virus has heightened our fear to another level altogether, despite the government advice that it does not appear to affect many children (Family taking part in the study)

Some of the SHARE study’s key findings are:

  • 98% are worried about the virus, and 98% are worried about their child’s health if they get the virus.
  • 93% have felt isolated during the pandemic, and 57% said isolation has brought up negative memories.
  • 89% think their child should be isolated from everyone except immediate family during the pandemic and some families have not left the house at all during the outbreak.
  • 95% are fearful that their child will catch the virus from their parent.
  • 93% fear their child’s treatment will be cancelled or delayed and this has been the experience for some families who have lost vital therapies for their child and had planned procedures cancelled.
  • 59% had struggled to get nursing support during the pandemic, and 66% struggling with in-home care. 86% had experienced difficulties accessing therapies like physio for their child.
  • 95% are worried about nurses or carers coming into their own home and are having to make difficult decisions that involve weighing up the risks and benefits of allowing people into the home.

Families caring for seriously ill children with complex conditions and often requiring 24/7 care, need lifeline support and care from an array of health and social care agencies. And, as they will carry on shielding long after lockdown has lifted, it’s vital that they get the right support. In the study, we asked families what additional support they need.  50 per cent said they need more support from community nursing or health visitors, 50 per cent from their GP, 66 per cent from their child’s hospital or specialist and 61 per cent needed more support from their children’s hospice. Importantly, parents told us that information that is specific to their child is needed to help them make decisions about what to do next.

It feels like the shielded are the forgotten group. The rest of the world is going back to normal, but we won’t be for some time. (Family taking part in the study)

“Coronavirus has changed all of our lives, and families caring for a seriously ill child feel more alone than ever,” says Andy Fletcher, CEO for Together for Short Lives.

“Lockdown has been so tough, and many families will understandably be nervous about ending shielding. The SHARE study mirrors Together for Short Lives’ experience of what families have told us via our helpline and family support services during the pandemic.”

“We are deeply worried about the long-term impact on children and families’ well-being and mental health. It’s vital that these vulnerable children and families get all the support they need, from government, the NHS and other vital services. In particular, we must do all we can to make sure children’s hospices can continue to provide lifeline care.”

The pandemic has hit hospices hard financially and that’s why our Children’s Hospice Week campaign is so important this year – it is vital that we pull together to protect the lifeline care that children’s hospices provide for vulnerable families today, tomorrow and long into the future.

Andy Fletcher, CEO, Together for Short Lives

The UK Government also has an important role to play in helping families of seriously ill children to feel less isolated. Together for Short Lives, in partnership with a coalition of other charities are calling on ministers to:

  • continue to provide support to isolated families of seriously ill children who will understandably be anxious about ending shielding
  • clearly setting out the education, health and social care support that families of seriously ill children are entitled to during the pandemic
  • working to restart the education, health and social care services that vulnerable children and families rely on as quickly and as safely as possible.

The Martin House Research Centre, Together for Short Lives, and the University of Southampton will publish the full findings later in the year.

About the charity Together for Short Lives

We want to help every child and family living with a life-limiting or life-threatening condition get the very best care and support they can so they can make the most of every moment together.

By supporting and speaking up for children and families, and those that support and care for them, we are driving for a better quality of life and end of life for children with life-limiting and life-threatening conditions. We want to help change lives.

Find out more about the charity at:

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Urgent Action Needed To End Equipment Crisis

A disabled children’s charity published a damning report today exposing major and unlawful failings surrounding the provision of specialist equipment to some of the UK’s most vulnerable children. 

Newlife the Charity for Disabled Children is urgently calling on the government to help those children whose lives are at risk because they don’t have the specialist equipment they need. 

In its report, Equipment Crisis for Disabled Children, launched today at the House of Commons, the charity highlights why children are being deprived of specialist equipment like walking frames, specialist car seats and beds, and has published a practical four-point-plan to fix it.  

“All children have the right to be safe and free from pain, they have a right to learn and a right to reach their potential regardless of diagnosis or disability,” explains Mrs Sheila Brown, OBE, Newlife CEO, and mum to two disabled children herself. 

“But every single day severely disabled and terminally ill children are denied their fundamental rights because existing policies preclude them, or decisions are made based on frugality rather than health and necessity.  The result is children are left to suffer in pain, their safety compromised, isolated from the world.” 

83% of local authorities apply unlawful ‘blanket bans’ that restrict equipment 

The use of blanket bans by local statutory services is widespread and challengeable in law.  This is one of the points Newlife is calling for action on.  Often used as a way to ration shrinking budgets, a blanket ban means local authorities refuse to provide a particular piece of equipment ‘under any circumstances’. Each authority has its own criteria for applying these bans for example; no wheelchair assessments for under threes and no walking frames for a child who will never walk independently. However, by far the most common is the blanket refusal to fund specialist, protective car seats for disabled children, irrespective of whether there is a medical need for one with 83% of local authorities applying such a ban.   

89% of children MISSING from disability registers 

Eight percent of children in the UK have a disability – just over 1.1 million children in all.  The Children’s Act 1989 requires all local authorities in England ‘establish and maintain’ a register of children with a disability in their area.   However, data exclusively obtained by Newlife shows less than 11% of children are included on local disability registers.  

Sheila continues: “Knowing the true number of disabled children in need is crucial. If only 11% are visible to public authorities, it’s impossible to budget and plan resources and services effectively in order to meet the need.  This also explains why local health and social care services are drastically failing to provide the care, support and equipment they need.”  

Medical improvements mean children born with conditions or who develop disabilities because of illness or accidents are surviving but with very complex needs requiring intensive support and in most cases multiple pieces of specialist equipment.  

Despite demand for equipment reaching critical levels, a quarter of local statutory services cut spending during 2016/17

Sheila continues: “There’s lots of complex reasons why children are being failed.  The law protects their rights to live safely, to have the opportunity to learn and to reach their potential, whatever that may be. 

“This matters to every family, cancers, accidents, birth defects and infections.  These risks are with us every day.  No-one thinks it will happen to them.  I didn’t, but that’s the reality.

“We believe that if the government ‘fixes’ the four big issues highlighted here, then hundreds of thousands of our children will benefit.”


We are calling on national and individual local statutory services to work with us to put in place our four-point-plan which will change hundreds of thousands of children’s lives:

FIX ONE: Cease the use of blanket bans for rationing equipment

Blanket bans are commonly used as a way to manage budget constraints.  Essential equipment is denied ‘under any circumstances’, this is arbitrary and fails to respond to their assessed needs.  

FIX TWO: Establish and emergency equipment response service 

Children in crisis cannot get equipment quickly enough.  Local statutory services don’t have an effective emergency equipment response service for children in urgent need.  This needs fixing to prevent injury, to allow hospital discharge and to relieve pain. 

FIX THREE: Introduce maximum waiting times for equipment assessments across health and social care

Waiting times for assessments for essential equipment are not capped, and there are widespread lengthy delays – families can wait months, sometimes years before their child is prescribed the equipment they need.  This leaves disabled children living in pain or at risk of injury and their families in constant anxiety.  They simply can’t wait. 

FIX FOUR: Ensure every disabled child is counted

Disability registers are failing.  Without an accurate measure, health and social care services cannot budget to meet the need.  Local authorities must put in place an accurate way to measure the number of disabled children to ensure that no child is invisible.
November 27, 2018