‘We just want to give our child a good death’: The family battling grief and a mountain of debt

Published

2 years ago

December 22, 2022

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Sophie Lewis knows one day she will face the most devastating moment for any parent – her daughter will die.

But when Isabel is gone the family will be left with not just overwhelming grief – but also a mountain of debt.

Isabel has Batten disease, a fatal disease attacking her nervous system. Children have a life expectancy of up to ten years. She is now 12.

But while the mum-of-four should be caring for her child, she is also fighting another battle: the rising cost of living.

“All we have ever done is fight – you fight for everything, but you don’t want to because that word ‘fight’ feels quite gross,” she told Sky News.

“Really what you are trying to do is give your child a good death and give them a good quality of life and comfort in the meantime.”

The Lewis family runs a “mini-intensive care unit” for Isabel, who now requires two-to-one care around the clock.

Three years ago, at the same time of year, it cost them £4.60 a day. This has now risen to £16.06, and the family has no idea how it is going to pay its soaring bills.

Ms Lewis, from Guildford, said: “In my deepest, darkest moments I have thought, I can’t go on like this, and the only thing that will stop it is if our daughter dies. And that is a terrible way to think, it’s heartbreaking.”

“We are only just surviving [the cost of living crisis],” she added.

“I don’t know what things will look like in a year or two if things continue as they are.”

‘There is nothing we can do’

Isabel experienced a few minor health issues before she was three and then, shortly before the birth of Ms Lewis’ second child, she was diagnosed with Battens disease.

“We just got a phone call one day telling us that she was going to die and there was nothing we could do about it,” she said.

Battens is a recessive disease, and Isabel “very rapidly began to lose her skills”.

She went from walking to crawling, to not being able to sit up anymore. Previously a chatty toddler, she was soon unable to say certain words and eventually stopped speaking altogether.

Isabel then lost her ability to swallow and eat, and eventually went blind.

By the time she was three, she needed full-time care.

The one place she is not in pain

Isabel is constantly in pain, except for when she is in the family’s hydrotherapy pool – a hot tub in the back garden.

But with their bills now topping £600 a month, of which they can barely afford to pay half, the family feel it can no longer turn this on.

“I feel guilty for talking about removing what some people might think is a luxury item in our home,” said Ms Lewis.

“But Isabel is bedbound, housebound, hasn’t left the house for over a year, hasn’t been to school for five years – her childhood and her life have been taken away from her.

“Suddenly I was in a position where I was thinking we can’t actually afford to heat the pool, the one place she is pain-free, and the one place where I can still hold her.

“And that is really hard to talk about because people lead you to a place over the years where they make you think having these things is your choice.”

She said parents are saving the NHS money, as Isabel’s hospital care would cost anywhere between £1,500 and £3,000 a day.

“We are doing that for her at home – as we should do, and we want to do that,” she said.

“She has only been in this situation for a few years and she won’t be here in a few years’ time.”

Growing mountain of debt

The family can no longer afford to keep up with its escalating energy direct debit and every day falls further into debt.

“It’s insulting hearing people say, put on a jumper or use an air fryer,” Ms Lewis said.

“Yeah, we could do all of that, but it still wouldn’t take away from the fact our energy bills are high, because we are at home all the time, we are running equipment and the heating is on to help my daughter regulate her temperature.”

The Lewis family is not alone.

Together For Short Lives is fundraising to provide grants to children receiving palliative care.

One family the charity supports recently hit the headlines after Kate Winslet donated £17,000 to help cover their rising energy bills.

Every parent’s worst nightmare

Andy Fletcher, its chief executive, said there are about 99,000 children living in the UK with a life-limiting or life-threatening condition.

Of these, around 3,000 are children who need ventilators to keep them alive.

“Parents already facing the emotional turmoil of the potential of their child dying in childhood, which is every parent’s worst nightmare,” he told Sky News.

“And on top of that, they’re trying to make as many special memories as possible with their children and family.

“And these are memories that will last them a lifetime, but at the same time, they’ve got these external pressures of rising costs.

“And that’s the real challenge when you are making choices at this time of year of what to prioritise because the number of Christmases they have may very well be short.”

A heart rate of four beats per minute

Hand in hand with soaring energy costs is the risk of blackouts in the UK, as rising demand puts pressure on supplies.

For 10-year-old George, a power cut at night is a matter of life or death.

With a resting heart rate of four beats per minute, he requires a ventilator at night to help him breathe.

Grandmother, Nicola Gatbutt, helps with his care as his mother, her daughter Holly, faces her own health issues.

After collapsing at work, Holly is now partially sighted.

But she has been told she does not qualify for personal independent payments – given to those who have a “long term physical or mental health condition” – despite not being able to drive, and having collapsed twice in the last two months and broken two joints.

Meanwhile, her electricity bill has tripled, taking it from £200 to £600.

“I am dreading my next bill,” Ms Gatbutt, from Skipton, said.

She goes to school with George five times a week as his carer and looks after him on some evenings, weekdays, and during the school holidays.

Energy companies, the grandmother and mother-of-three said, need to reduce their costs for children on long-term ventilation and provide them with more concrete advice on what to do in the face of a blackout.

‘He will never outgrow it’

The family also faces increased petrol costs – what used to cost £30 to and from the hospital now costs £55 – and Ms Gatbutt’s own mortgage has tripled, and now costs £305.

George has been ventilated since he was one year old and “he will never outgrow it”.

Despite his complex medical problems, Ms Gatbutt said: “If you see him in person it’s a different picture. He does cross country, he has just run a big race.

“He lives life to the full.”

UK

UK weather: Scottish hamlet reaches -18C in coldest January night in 15 years

Published

7 hours ago

January 11, 2025

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UK weather: Scottish hamlet reaches -18C in coldest January night in 15 years

Temperatures in a hamlet in northern Scotland fell to -18.7C (-1.66F) overnight – the UK’s coldest January night in 15 years, the Met Office has said.

Altnaharra, in the northern region of the Highlands, reached the lowest temperature while nearby Kinbrace reached -17.9C (-0.22F).

It is the coldest January overnight temperature since 2010, when temperatures dropped below -15C several times at locations across the UK, including -22.3C (-8.14F) on 8 January in Altnaharra.

Forecasters had previously said there was a very small probability it could reach -19C.

Met Office meteorologist Alex Deakin said: “Friday night into Saturday morning may well be the nadir of this current cold spell.”

Temperatures for large parts of the UK are set to fall again as the cold weather continues.

Met Office meteorologist Zoe Hutin said: “We’ve still got tonight to come, and tomorrow (Saturday) night could also be chilly as well.

“Temperatures for tomorrow night, it will be mainly eastern parts that see temperatures dropping widely below freezing, so East Anglia, the northeast of England, northern and eastern Scotland as well.

“So another chilly night to come on Saturday, but then as we go into Sunday and into Monday, then we can start to expect temperatures to recover somewhat.

“I won’t rule out the risk of seeing something around or just below freezing again on Sunday night into Monday, but it won’t be quite so dramatic as the temperatures that we’re going to experience as we go overnight tonight.”

On Monday, temperatures are expected to be more in line with the seasonal norm, at about 7C to 8C.

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The freezing conditions have led to travel disruption, with Manchester Airport closing both its runways on Thursday morning because of “significant levels of snow”. They were later reopened.

Transport for Wales closed some railway lines because of damage to tracks.

Hundreds of schools in Scotland and about 90 in Wales were shut on Thursday.

Meanwhile, staff and customers at a pub thought to be Britain’s highest were finally able to leave on Thursday after being snowed in.

The Tan Hill Inn in Richmond, North Yorkshire, is 1,732 feet (528m) above sea level.

Six staff and 23 visitors were stuck, the pub said on Facebook.

UK

Government contract ends for controversial asylum barge Bibby Stockholm

Published

10 hours ago

January 11, 2025

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Government contract ends for controversial asylum barge Bibby Stockholm

The government contract for the controversial asylum barge in Dorset has ended.

The last asylum seekers are believed to have left Bibby Stockholm at the end of November after Labour said it would have cost more than £20m to run in 2025.

Its closure this month was expected, and on Friday the management firm and the Home Office confirmed to Sky News the contract had now expired.

It’s currently unclear when Bibby Stockholm will leave Portland and what it will be used for next.

The Conservative government started using the vessel in August 2023.

It said putting nearly 500 men on board while they waited for an asylum decision was cheaper than paying for hotel rooms.

However, it was controversial from the start and sparked legal challenges and protests.

Days after the first group boarded there was an outbreak of Legionella bacteria in the water system and it had to be evacuated for two months.

In December 2023, an Albanian asylum seeker, Leonard Farruku, died on board.

A Home Office spokesperson said the government was determined to reform the asylum system to make it operate “swiftly, firmly and fairly”.

“This includes our accommodation sites, as we continue to identify a range of options to reduce the use of hotels,” the new statement added.

“We are already closing some hotels and will continue to engage with local authorities and key stakeholders as part of this process.”

UK

How is your local NHS coping under winter pressures?

Published

10 hours ago

January 11, 2025

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How is your local NHS coping under winter pressures?

Pressure on hospitals is particularly high this winter, with more than a dozen declaring critical incidents in recent days.

Hospitals struggle every winter with additional pressures due to the impact of cold weather, but the early arrival of flu this season and high volume of cases meant Christmas and New Year’s weeks were even busier than usual.

There are currently at least 20 hospitals that have declared critical incidents in England, although this is a fast-moving picture, and some trusts will go into critical incident for as little as half an hour.

The latest NHS winter situation reports give a more detailed look at the level of pressure experienced by individual trusts, including those with the worst ambulance handover delays and highest levels of flu patients.

Ambulance handover delays

When a patient arrives at a hospital in an ambulance, clinical guidelines suggest that it should take no longer than 15 minutes to transfer them into emergency care.

It is now common for handovers to regularly exceed this timeframe, however, when emergency departments are overcrowded and lack the capacity to keep up with new patient arrivals.

This is risky for patients because it delays their assessment and treatment by clinicians, and also reduces the availability of ambulances to respond to new incidents.

The trust with the longest delays was University Hospitals Plymouth, with an average handover time of three hours and 33 minutes over the week – two hours and 40 minutes longer than the average for England. It also recorded the longest average handover times for a single day, at five hours and 14 minutes on New Year’s Day.

Use the table below to search for local ambulance handover times:

On 7 January, University Hospitals Plymouth declared a critical incident at Derriford Hospital due to “significant and rising demand for hospital care”, though this has since been stood down.

The Shrewsbury and Telford Hospital Trust had an average ambulance handover time of three hours and 15 minutes, increasing by more than an hour from one hour and 51 minutes the week before.

In Royal Cornwall Hospitals NHS Trust, 83% of handovers took more than 30 minutes, the highest share among areas dealing with more than five ambulance arrivals per day.

This area also recently declared and then stood down a critical incident.

In total across England, 43 trusts out of 127 had average handover times of more than an hour, while nine areas had average handover times of more than two hours.

Flu

This winter’s flu wave arrived earlier than usual and has hit health services hard.

Over New Year’s week, there were 5,407 flu patients in hospitals in England on average each day, more than three times higher than during the same week last year and increasing by 20% from the week before.

The worst impacted trusts were Northumbria Healthcare and University Hospitals Birmingham, with 15% and 13% of all available beds occupied by flu patients respectively in the latest week.

Wirral University Teaching Hospital NHS Foundation Trust had among the biggest increase in flu patients from the previous week, more than doubling from 18 to 42 patients per day on average.

Use the table below to search for local flu hospitalisations:

There are some indications that flu activity may have now peaked, with national flu surveillance showing a decrease in positive flu tests in the latest week, though activity remains at high levels.

Bed occupancy

Current NHS guidance is that a maximum of 92% of hospital beds should be occupied to reduce negative risks associated with overfilled beds.

These risks include the impact on patient flow resulting from it being more difficult to find beds for patients, and negative impacts on performance and waiting times, as well as being linked to increased infection rates.

In the week to 5 January, 92.8% of 102,546 open hospital beds were available each day on average, not far off the recommended level.

However, bed occupancy was very high in some trusts, with more than 95% of beds occupied in 43 trusts on average over the week.

The trust with the highest rate of bed occupancy was Wye Valley NHS Trust, with 99.9% of 332 beds occupied on average throughout the week.

There was only one day when beds weren’t fully occupied, on 3 January, when two beds of 322 were available.

Use the table below to search for local bed occupancy:

Kettering General Hospital NHS Trust recorded bed occupancy of 98.5% over the week. This trust declared a critical incident on 8 January.

Part of the problem for bed availability is prolonged hospital stays – also known as bed-blocking.

This is often linked to pressures in other parts of the health and social care system, for example when patients can’t be discharged to appropriate social care providers even though they are ready to leave hospital.

Just under half of beds occupied by patients in English hospitals last week were occupied by long-stay patients who had been there for seven or more days.

In seven trusts, at least three in five beds were occupied by long-stay patients, while in Barking, Havering and Redbridge University Hospitals NHS Trust the figure was more than four in five beds.

The Data and Forensics team is a multi-skilled unit dedicated to providing transparent journalism from Sky News. We gather, analyse and visualise data to tell data-driven stories. We combine traditional reporting skills with advanced analysis of satellite images, social media and other open source information. Through multimedia storytelling we aim to better explain the world while also showing how our journalism is done.