We are calling on NHS England to publish a long-awaited guide to help children’s hospice and palliative care services meet the needs of vulnerable and seriously ill, isolated children during the coronavirus pandemic.
The guidance – a standard operating procedure (SOP) on providing children’s palliative care in children’s hospices and in the community in England – was rapidly drafted by officials in conjunction with children’s palliative care professionals in March.
The SOP would help make clear to both commissioners and providers what actions are needed to make sure seriously ill children and their families can receive the palliative care they need safely at home and away from hospital settings. This is due to the increased infection risk in hospitals – and the fact that many families will be forced to continue to shield their children at home for the foreseeable future. It would help children’s hospice and palliative care providers to offer vital services including end of life care, emergency short breaks and emotional and psychological support to seriously ill children and their families at home and in children’s hospices as safely and effectively as possible.
Despite being one of the first SOPs drafted by NHS England to respond to the crisis in March, it is still not published. MPs and peers have tabled a number of questions in Parliament in recent weeks to ask when the SOP will be made available. On 29 April, Care Minister Helen Whatley responded to Catherine McKinnell MP saying that the SOP was due to be published shortly.
I just hope that the Government will issue its COVID-19 standard operating guidance for children’s hospices as soon as possible.Emma Jerram, mum of Noah
Emma Jerram is Mum to Noah, who has a life-limiting condition and is supported by Julia’s House Children’s Hospices. She explains why the SOP is so important.
“Noah is admitted to hospital on average once a month as an emergency, sometimes as often as twice a week. His last admission, to Salisbury Hospital, was five weeks ago for five nights, as an intensive care patient on the Children’s Unit. Once he was discharged from hospital, the Julia’s House Hospice Nurses couldn’t restart their valuable home respite sits until Noah was fourteen days clear of developing any COVID symptoms, which is the time you need the support the most as your child is still extremely unwell.
“The Julia’s House Nurses are highly organised, they come out with all the right PPE and it’s a real lifeline. As someone who has worked in nursing, I fully appreciate how important hospice care is and I just hope that the Government will issue its COVID-19 standard operating guidance for children’s hospices as soon as possible. They need to be given the same support as hospitals.”
Many [parents] will reach breaking point over the coming months. It is crucial that children’s palliative care services get the guidance they need from NHS England to help them reach out safely with lifeline care and supportAndy Fletcher, CEO Together for Short Lives
Andy Fletcher, Chief Executive of Together for Short Lives agrees that NHS England needs to urgently issue guidance to children’s hospices and palliative care services. “Coronavirus has had a damaging impact on seriously ill children and their families and is likely to do so for some time to come,” Andy explains. “As the government considers how to ease social distancing restrictions for the majority, these parents will continue to feel the pressure of isolation at home as they provide complex, 24/7 care to their children themselves, shielding them from infection. Many will reach breaking point over the coming months. It is crucial that children’s palliative care services get the guidance they need from NHS England to help them reach out safely with lifeline care and support at home and in children’s hospices.”
Andy acknowledges and welcomes the positive progress that has been made by HM Treasury, the Department of Health and Social Care and NHSEI in providing £200 million to hospices in England and in making regular personal protective equipment deliveries to hospices. But he says it’s “vital” that this important guidance is now published as a “matter of urgency” to provide services with the clarity they need to support these vulnerable children and their families.
The SOP is vital to ensure families can access the care and support that they need, both now and in the months ahead.Tracy Rennie, Acting CEO East Anglia's Children's Hospices
Tracy Rennie, Acting Chief Executive of East Anglia’s Children’s Hospices (EACH), also agrees that the SOP is important to help support their vital work. “Children’s hospices are acutely aware of the impact coronavirus is having on families as they continue to shield and care for their children who are extremely vulnerable,” Tracy says. “The procedure describes the services which children’s hospices, alongside their NHS and social care colleagues can provide, to ensure safe care and support for children and families at a time of extreme anxiety and ongoing uncertainty. This situation will not change anytime soon and the procedure is vital to ensure families can access the care and support that they need, both now and in the months ahead.”
Together for Short Lives is calling on people in England to write to their MP to ask them to raise this vital issue with Health and Social Care Secretary Matt Hancock.