Days after his wife died after suffering with dementia, a retired civil servant from Jesmond is determined to "shout from the rooftops" to improve the social care system and provision for those with the debilitating illness.
Bill Wilson, 67, has been a carer for his wife Dr Jo Wilson for several years. After a years-long fight to get her a bed in a residential care home, she finally moved in just days ago, only to die on Saturday. Bill said he was still "numb" but also "deeply angry" at the Government - and vowed to make lasting change his wife's legacy.
Jo, 69, had been an international business consultant, a nurse and a midwife, and completed numerous degrees including a PhD before falling ill. The couple had been together for 50 years - and Bill said her death was a "huge shock to the system".
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He has been outspoken about his struggles with the social care system over the last two years, culminating in a heartbreaking BBC film which highlights the emotional strain it caused when a social care package was withdrawn due to a lack of carers. At one stage he said he unsuccessfully called 67 care homes trying to find a space for respite care.
He said his experience had left him unequivocal - and that there needs to be lasting and wholesale change. He has backed Alzheimer's Society campaigning demanding the Government lives up to previous promises which would see social care reformed and research into dementia prioritised.
He added: "Successive governments have used people like me as unpaid carers and that's propped up the system. As long as people like me love their loved ones enough and are prepared to do this, the Government will take advantage.
"I'm not doing this for me and Jo - it's too late for us. But It's not too late for others. If I can stand up from the rooftops shouting about dementia, I will be doing that until the whole world is doing so. That's how we are going to change this. Now more than ever I will keep doing so."
Looking back at a traumatic time, he said his experience of home care had felt like "lighting a cigarette with a £50 note, every day" and added that every time he had been forced to take Jo to A&E he had seen - in ambulance queues and incredibly busy A&Es - how the health and care system was breaking.
"You just see all the ambulances waiting", he said. "And anything the Government does to help that will just be a sticking plaster unless they fix social care. Unless you do that you will always have ambulances being held up.
What really needs to take place, and probably won't, is they need to scrap the social care system and rebuild it from scratch. It's like looking back to July 5 1948 [the date the NHS was founded] - when they had the brilliant idea of care for everybody free at the point of need."
Bill's words echo those of paramedics themselves, who have this week spoken of how problems with the safe discharge of NHS patients - often due to a lack of social care placements - had a knock-on effect throughout hospitals and the ambulance service.
Bill said he was inspired by his wife's fight - she "showed her personality to the last", he said - and would not stop campaigning. He said: "This is so, so important, and even more so now that Jo has died. I want to do everything in her name now, I will make sure that she has a legacy and that it is change. I may have lost my own little soldier, but I will win this war."
He added a poignant tribute to his wife - who worked around the world, saying: "She was a business consultant, a nurse, a midwife. She had more letters after her name than are in mine. She always had to be the best - she was inspiring and a faultless academic. I have been so proud of her. She was all about help and she wanted to create change - that's why we are here now."
Last week, Bill backed an Alzheimer's Society campaign demanding the Government fulfil its promises when it comes to dementia and social care. Along with 1,500 others in the North East, he signed a letter delivered to Downing Street by the charity, ambassadors including actor Vicky McClure and a number of MPs.
The letter urged Rishi Sunak to live up to the commitments of previous administrations and keep dementia high on the political agenda. Bill himself said: "Improving diagnosis rates must also be a Government priority. Right now, it just doesn’t feel like it is."
In response to the Alzheimer's Society campaign, a spokesperson for the Department of Health and Social Care said: “We want a society where every person with dementia, their families and carers, receive high quality, compassionate care, from diagnosis through to end of life. We invested £17 million in tackling dementia waiting lists and increasing diagnosis rates last year and we have committed to double the funding for dementia research to £160 million a year by 2024/25.
“We are making up to £7.5 billion over the next two years available to support adult social care and discharge – the biggest funding increase in history – and are promoting careers in care through our annual domestic recruitment campaign and by investing £15 million to increase international recruitment of carers."
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