‘You feel forgotten’ – patient describes ‘agonising’ wait for care

A patient has described how “every aspect” of her life has been affected by waiting for nearly four years for NHS care.

Jo Goulding said that waiting for surgery had a “huge impact” on her family and how her physical health deteriorated while she was waiting for care.

Mrs Goulding, who has lived with rheumatoid arthritis since she was seven, has been waiting for various surgeries since summer 2018.

Friends told the 49-year-old she was “fading away” because the pain had “eaten her up”.

The civil engineer from Warwickshire stopped laughing, stopped socialising and found it difficult to lead an independent life.

The mother-of-two said that she wanted to speak out about her experience of waiting so that people could understand the human stories behind the NHS waiting list.

In England some 6.1 million people are waiting for hospital care, including more than 23,000 who have been waiting for more than two years.

Mrs Goulding said that the patients who have been waiting the longest “get lost” in the numbers.

It comes as the PA news agency published data obtained by Freedom of Information requests which show that dozens of people have been waiting at least three years for hospital care in England.

Mrs Goulding had both hips replaced at the age of 22.

She has been waiting since 2018 for two elbow replacements and since 2019 for a shoulder replacement.

Mrs Goulding recently had her left hip re-replaced, because the artificial joint from three decades ago was causing severe pain and restrictions on her mobility.

She was put on the waiting list at the beginning of 2020 but did not have the operation until the end of March this year, after more than two years of waiting in pain.

Due to the length of the wait, when she was finally seen she needed more extensive surgery because the artificial hip had caused problems with her pelvis.

Speaking to PA, Mrs Goulding said: “The pain was eating me up from the inside out, nothing took the pain away, and the limitations in my life have been soul destroying.

“I don’t know how I managed over the last two years.

“I have just existed, relying on painkillers to get by.

“The most upsetting thing is that it’s not just my life, but my family’s lives too, which have been affected.

“The impact on my family’s life has been huge, because I became pretty much housebound that meant that my children were too.

“My kids are only little, nine and 10, and I found my daughter crying the other day because she’d seen me wincing in pain, knowing there was nothing she could do to help me.

“My husband has been under so much pressure trying to work, keep the house going, and be my carer all at once.”

She said that living with chronic pain “sucks the life out of you”, adding: “It was agonising to do even the simplest things, like hug my children, cook them a meal, or go for a family walk.

“I eventually stopped being able to walk around the house, so we had to re-mortgage and adapt our home.

“I constantly worry about whether I’ll be able to work for long enough to pay it off, arthritis is so unpredictable and I’m still waiting for surgery on my shoulder and elbows.”

Mrs Goulding described the relief of having the first of four operations as “indescribable”, adding: “I feel like me again now.

“There have been little achievements every day and it’s phenomenal to not feel that horrendous arthritic pain in my left hip anymore.

“It was a bigger operation than it needed to be because the surgeon had to repair damage to my pelvis caused by all the delays.”

She described how patients in the hospital beds next to her were “sent home crying” because their surgeries were called off at the last minute due to staff absences.

But she added: “I completely understand why this is happening.

“The NHS is stretched beyond belief and is at breaking point.

“It must be as soul destroying for the staff as it is for us, the people who are waiting in pain.

“I’m just one of tens of thousands of people who have been waiting a long time, you feel like you’re forgotten and nobody’s interested.

“It has affected every aspect of my life: getting dressed; having to change the clothes that you wear so that they’re things that you can put on yourself; not being able to put your own shoes on; personal care; looking after the home; it affects work; your confidence; being able to socialise with friends.

“I can’t remember the last time I went out with friends and I’m a really sociable person.

“My friends said ‘it’s almost like you were fading away because the pain was just eating you up’… I wasn’t laughing, my personality just changed.

“When I say it’s all encompassing, it literally is every aspect of your life.”

She added: “Nobody ever talked about waiting lists until recently and even now, when people talk about waiting lists they talk about you know how the (NHS) publishes (data on) how people have been waiting two years plus, OK, but what about three years or four years?

“Those people get lost in those numbers.

“And we are people, we’re real, and we deserve some help as well.”

Tracey Loftis, head of policy and public affairs at the charity Versus Arthritis, said: “Hundreds of thousands of people with arthritis are waiting for treatment in increasing pain, their mobility and quality of life getting worse.

“As longer waits increase the chances of complications, waiting several years for surgery is completely unacceptable.

“We have been calling for a dedicated support package to be rolled out to help people get the hands-on support that they need.

“It should be an urgent priority for local health care systems to deliver.”