Jo Whiley forced to consider palliative care for Covid-infected disabled sister


Radio 2 Jo Whiley appeared on The Andrew Marr Show today saying the last seven days – following her younger sister Frances contracting Covid in her care home – had been ‘the worst week of my family’s life’. 

She urged the government to better protect those with learning disabilities after she was offered a vaccine before her sister, despite her sister being vulnerable. 

Frances has severe learning difficulties and diabetes, is currently in hospital in Northamptonshire after she tested positive for the virus. The 53-year-old suffers from a rare genetic syndrome called Cri du Chat – a chromosomal condition that results in delayed development.

Whiley, 55, said she ‘desperately’ wished her sister had been vaccinated first and called on the government to ‘forget the classifications’ when it came to the vaccine.  

She said her sister’s condition had deteriorated on Saturday before her oxygen levels had increased again last night. Visibly emotional, she told presenter Marr: ‘It’s been the worst week of our lives without a shadow of a doubt.’ 

She shared that Frances had been ‘so terrified’ about being admitted to hospital that she ‘rampaged and people couldn’t contain her’ leading to security guards being forced to restrain her. 

 

The visibly emotional DJ, 55, told Andrew Marr that Frances, who has severe learning difficulties, had been so distressed at being admitted to hospital that she rampaged through the building (The sisters pictured at the star’s parents home in Northamptonshire)

Radio 2 star told The Andrew Marr Show that the family had been forced to discuss palliative care after Frances' condition deteriorated yesterday - but said her oxygen levels had rallied as the day went on

Radio 2 star told The Andrew Marr Show that the family had been forced to discuss palliative care after Frances’ condition deteriorated yesterday – but said her oxygen levels had rallied as the day went on

Jo told Andrew Marr her parents 'hadn't slept for days' but that she's hopeful of a recovery for Frances, who's an 'amazing fighter'

Jo told Andrew Marr her parents ‘hadn’t slept for days’ but that she’s hopeful of a recovery for Frances, who’s an ‘amazing fighter’

What is Cri du Chat syndrome? 

Cri du Chat syndrome, also known as ‘5p minus’ syndrome, is a chromosomal condition that results when a piece of chromosome 5 is missing.  

This is because of one of its key identifying symptoms is a cat-like cry that those with the condition make as children.

Other symptoms include severe cognitive, speech and motor disabilities and behavioural problems such as hyperactivity, aggression, outbursts and repetitive movements.

There are also physical symptoms, with those who have the syndrome often having smaller heads and widely-spaced eyes (hypertelorism). 

Diagnosis is primarily based on the distinctive ‘cat cry’ and accompanying physical problems 

The syndrome affects around 1 in 50,000 live births and is slightly more common in women than men. The condition is not treatable, though children can undergo speech and physical therapy to help with some of the symptoms.

The star described how her younger sibling’s health had taken a turn for the worse, saying: ’24 hours ago we were talking palliative care – yesterday, she rallied round and we are seeing her oxygen levels rise so we have hope. 

‘She is an amazing fighter and always has been an amazing fighter.’

Speaking in a recorded interview ahead of the live show, Jo said she wasn’t aware how her sister was this morning, which left her ‘anxious’, saying: ‘waking up to having no news is a scary thing.’ 

The star also revealed that her elderly parents hadn’t slept for days, but were allowed to be with their daughter, and detailed the difficulties in trying to get an oxygen mask on Frances and the challenge of sedating her.  

The broadcaster said the fact she’d been offered the jab and not her sister felt like the ‘cruellest twist in the world’ after she’d been wanting her sibling to get it, ‘to be protected’, for almost a year.  

She tweeted after the appearance: ‘I felt I owed it to the LD community to explain the unique challenges they face with this horrific virus & to let them know they are not forgotten or of less value in society.’ 

Last week, the DJ, was forced to cancel her Radio 2 show after her sister Frances’ illness left her feeling ‘very scared’ on Thursday.

She shared on social media: ‘I can’t do my @BBCRadio2 show this evening. 

‘My sister Frances is v poorly in hospital with Covid. 

‘I don’t feel shiny or happy tonight, I feel very scared. However I’ll be listening to @willyoung who I know will light up our kitchen in the depths of our darkness.’ 

 

After her appearance on the BBC show, she said: 'I felt I owed it to the LD community to explain the unique challenges they face with this horrific virus and to let them know they are not forgotten or of less value in society.'

After her appearance on the BBC show, she said: ‘I felt I owed it to the LD community to explain the unique challenges they face with this horrific virus and to let them know they are not forgotten or of less value in society.’

On Thursday, Jo cancelled her Radio 2 evening show after her sister Frances' illness left her feeling 'very scared'

On Thursday, Jo cancelled her Radio 2 evening show after her sister Frances’ illness left her feeling ‘very scared’

Frances (pictured), 53, suffers from a rare genetic syndrome called Cri du Chat - a chromosomal condition that results in delayed development

Frances (pictured), 53, suffers from a rare genetic syndrome called Cri du Chat – a chromosomal condition that results in delayed development

She tweeted on Thursday: 'I can’t do my @BBCRadio2 show this evening. My sister Frances is v poorly in hospital with Covid'

She tweeted on Thursday: ‘I can’t do my @BBCRadio2 show this evening. My sister Frances is v poorly in hospital with Covid’

The radio presenter previously blasted the Government’s vaccination program after she was offered a coronavirus jab before her sister who lives in a care home. 

‘Fit and healthy’ Whiley said it was ‘mind boggling’ she was offered a jab before her younger sister Frances – who has diabetes and complex learning difficulties.

She said she would give up her vaccine ‘in a heartbeat’ in favour of it going to those in a situation such as her younger sister. 

Frances was moved into residential care in Northamptonshire in 2015 after her ‘challenging behaviour’ resulted in her needing specialist care. 

But the former Radio One DJ said her ‘blood ran cold’ when she and her family were informed of a Covid outbreak at the care home. 

Jo, pictured with her sister Frances, told followers that  her sister had been left 'distressed and confused' by a Covid outbreak at the care home where she lives

Jo, pictured with her sister Frances, told followers that  her sister had been left ‘distressed and confused’ by a Covid outbreak at the care home where she lives 

She called for the Government to prioritise those with learning difficulties for the vaccine. 

Ms Whiley also believes Frances, who is due to be vaccinated in priority group six as part of the ‘all adults at risk’ group, should have been vaccinated in group four due to her diabetes.

Speaking to Radio 4’s Today Programme, Ms Whiley said:  ‘We’ve done everything we can to try and facilitate the vaccine getting to people who need it most. 

‘She (Frances) is in group six but she also has diabetes quite bad diabetes, which should put her in group four.

‘I would have thought she should have received it, but she hasn’t. I just want to speak up for people like Frances, who have been overlooked, because this happens so often with people with learning difficulties, who haven’t got a voice.

‘I can’t tell you how frustrating it is and how horrendous it is. It’s the stuff of nightmares.

‘Then ironically I got a message to say I was due to have my vaccine, before my sister, who has learning disabilities and underlying health conditions, go figure.’  

Ms Whiley, who thinks she has been offered the vaccine due to her status as a carer for her sister, added: ‘My mind is boggling, it really is, and I would give up my vaccine in a heartbeat for my sister and any of the residents in that care home.’

The radio presenter has been vocal on her social media platforms about trying to get her younger sister Frances, who has diabetes and learning difficulties, the vaccine. 

The broadcaster said it had been a ‘long, anxious weekend’ after there was an outbreak of Covid at Frances’ care home in Northamptonshire. 

NHS England officially moved onto the next stage of the roll-out on Monday, inviting over-65s and adults with underlying conditions. The national guidance up until now was to focus on the four priority groups — over 70s, NHS staff, care home residents and workers, and seriously-ill adults.

But over-60s in some areas leading the way in the vaccine roll-out have already been contacted. NHS bosses say local health teams can make their own way down the list of nine priority groups, so long as they have attempted to reach everyone above them.  

Official figures suggest that more than 2million Brits in the top four priority groups have still yet to be vaccinated, despite ministers saying they have all been offered a jab.  

Meanwhile, figures from the Office of National Statistics (ONS), reported as part of the Radio 4 interview, showed how 6 in 10 people who died of Covid up until November last year had a disability. 

Ms Whiley told her followers: ‘Still no vaccination for Frances and now there’s an outbreak of COVID in her care home. 

‘Staff are doing all they can to keep everyone safe but it’s the stuff of nightmares.

‘She’s distressed and confused, my parents and I never more scared and sad for her.’

In a later post, revealing she had been offered the vaccine, she wrote: ‘Blimey, the irony. I’ve just been asked to book my vaccine. 

‘I desperately wish my sister had been offered the vaccine before me. I am fit and healthy. She has learning disabilities and diabetes.’   

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