Children's hospice charity CHAS 'needs to raise £60 million'

Mr Okasha is speaking to The Herald days after the charity launched a new four-year strategy which sets out plans to work more closely with the NHS and local authorities, and have earlier involvement around the time of diagnosis.

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Around 150 children a year in Scotland die from a life-shortening illness, a figure that has remained mostly static over time.

However, the number requiring long-term support for complex conditions has increased as medical advances have extended survival.

"The number of children in Scotland who have a life-shortening condition has gone up, and the main reason for that is they are living longer," said Mr Okasha, who joined CHAS from the Care Inspectorate in February 2020 - just five weeks before lockdown.

"Medicine is keeping these children alive, which is amazing, but they need a lot more care.

"Some are living into early adulthood now who a generation ago would have died in childhood.

"There's more babies who are born really prematurely and who need a lot of technology and medicine to support them to stay alive.

"The need for care is changing, and those children are getting more complex.

"So we need to be able to support children who are more complex and support them over a longer period of time, and do it at a time when raising money is really hard.

"We had to think: what are the things we really need to focus on and prioritise, and what can we do differently so that we can support families?"

At any one time the charity is supporting around 450 children with life-shortening illnesses in its hospices and the community, plus an additional 200 in hospitals.

Rami Okasha, pictured at the Robin House hospice, in Balloch (Image: Gordon Terris/Herald&Times)

CHAS employs specialist palliative care consultants who are based in Scotland's three sick kids' hospitals in Glasgow, Edinburgh, and Aberdeen.

It recently recruited two additional consultants from Great Ormond Street in London who will spend two days a week in hospitals, two in the CHAS hospices, and one day on-call for families requiring end-of-life care for their children.

Mr Okasha said: "We receive about a third of our funding from Government every year, but the reality is that end of life care in Scotland is paid for by charities, and we need to raise more than £60 million over the next five years just to stand still.

"That's really significant, and it's at a time when families themselves are feeling the pinch, but people are incredibly generous.

"But palliative care for children is really expensive - we are providing nurses, doctors, healthcare professionals, and we need to compete alongside the NHS to recruit those staff."

For reasons that are not entirely clear, children living with life-shortening conditions are 50% more likely to be living in the most deprived communities than the most affluent areas.

As a result, factors such as the cost of living crisis have hit these families disproportionately.

"If you are a full time carer for a child - particularly if you are a single parent - you're not going to be working, so there's an element of acquired poverty.

"But many of the families we support were in poverty before their child presented with a life-shortening illness.

"It's really incredible, and that's not just in Scotland - this happens across the world."

The "triple whammy" of social care cuts, NHS pressures, and the cost of living has been particularly tough, added Mr Okasha.

"Two thirds of the families we support tell us that there are gaps in their care - they don't have enough support from local authorities or social care partnerships, and that is about staffing.

"These are children with really complex medical conditions who tend to require someone with a high degree of skill - usually a nurse - to provide the case that they need. 

"Then when it comes to the cost of living and energy - a lot of these families need to have a lot of equipment running at home: ventilators, care beds need to be kept warm, they might need dehumidifiers on the whole time, or it might be that the child needs the washing machine on 10 times a day.

"These are really expensive, so we intend to step up on that. We've got the money advice team now that started just before lockdown, and has come into its own in the last few years.

"This year we have generated just over £1million worth of financial benefits - additional benefits and grants and so on - to help these families out."

Mr Okasha said he wanted to see CHAS getting involved with families at an earlier stage after diagnosis (Image: GordonTerris/Herald&Times)

While most people associate hospice charities with end-of-life care, the ethos behind CHAS is about "living well" as much as "dying well". 

Families can stay at its hospices for respite breaks where nurses take on round-the-clock caring to give parents and siblings a rest, and it also has volunteers who visit families at home to help out with housework, shopping, preparing meals and entertaining the children. 

Mr Okasha is also keen that over the next four years CHAS becomes involved with families much earlier. 

He said: "We often haven't been involved early enough because it's quite scary to say to families 'okay, you've been diagnosed with a life-shortening condition, we're going to refer you to the hospice'.

"That is a scary conversation to have because people's perception is that a hospice means the very end.

"We have a job to re-describe what a hospice for children is - that it's about supporting people fro beginning to end.  

"What we've heard from families is that they would often be told 'your child has this, we'll get an appointment for you to talk to someone in a few months time', and they have 1001 questions. 

"Their lives been turned upside down. All the expectations they had about their family have changed overnight.

"There is a real need for emotional support upfront, and practical support - how do you start claiming benefits, what happens to your house, do you need to get a wheelchair, does your house have to be adapted?

"We have a team of social workers and family support officers who work in the hospices, but those staff will be working more closely in hospitals where a lot of children are diagnosed, and at an earlier stage in their journey.

"We think that will make life a bit easier for families when they go through this traumatic experience of learning your is seriously ill."