Carol Forsyth, a 54-year-old woman from Glasgow, has shared her harrowing experience of living with incurable bone cancer and relying on food banks to feed herself and her family. She is one of the thousands of Scots who have faced long delays in receiving the new Adult Disability Payment (ADP), a benefit that replaced the Personal Independence Payment (PIP) in Scotland.
The diagnosis that changed her life
Carol was diagnosed with multiple myeloma, a type of cancer that affects the plasma cells in the bone marrow, in 2019. She had been feeling unwell for months, but did not suspect anything serious until she collapsed at work. She was rushed to the hospital, where she underwent a series of tests and scans. The results confirmed her worst fears: she had cancer, and it was incurable.
“I was devastated. I couldn’t believe it. I had no idea what multiple myeloma was, or what it meant for me and my future. I was told I had about five years to live, but it could be less or more depending on how I responded to treatment,” she said.
Carol had to quit her job as a care assistant, as she was too weak and vulnerable to infections to work. She applied for PIP, a benefit that helps people with disabilities or long-term health conditions with the extra costs of living. However, she faced a long and stressful process of filling out forms, providing evidence, and attending assessments.
The wait that pushed her to the brink
Carol waited for months to hear back from the Department for Work and Pensions (DWP), the UK government agency that administers PIP. She received no payments during this time, and had to rely on her husband’s income and savings to pay the bills and buy food. However, as her condition worsened, she needed more medication, equipment, and support, which drained their finances.
“We were struggling to make ends meet. We had to cut down on everything. We couldn’t afford to heat the house properly, or buy fresh food, or treat ourselves to anything. We had to borrow money from friends and family, and use credit cards to pay for essentials. It was humiliating and depressing,” she said.
Carol and her husband also had to resort to using food banks to feed themselves and their two teenage children. They visited the Glasgow North East Food Bank, run by the Trussell Trust, a charity that provides emergency food and support to people in crisis.
“It was a lifeline for us. The staff and volunteers were so kind and helpful. They gave us food parcels, toiletries, and advice. They also referred us to other organisations that could help us with our situation. We are so grateful for their support,” she said.
The relief that came too late
Carol finally received a letter from the DWP in March 2020, informing her that she had been awarded PIP. She was relieved and happy, but also angry and frustrated that it had taken so long.
“It was a huge relief to get the money. It made a big difference to our lives. We could pay off some of our debts, buy better food, and heat the house more. We could also afford to buy some things that made my life easier, like a wheelchair, a recliner chair, and a stairlift. It gave me some dignity and independence,” she said.
However, Carol’s joy was short-lived. In July 2020, the Scottish Government took over the responsibility for PIP from the DWP, and replaced it with ADP, a new benefit that aimed to be more fair, flexible, and accessible. Carol had to reapply for ADP, and go through the same process of filling out forms, providing evidence, and attending assessments.
She waited for another six months to hear back from Social Security Scotland, the Scottish Government agency that administers ADP. She received no payments during this time, and had to rely on her PIP payments, which were due to stop in January 2021.
“I felt like I was back to square one. I had to prove myself again, and wait for another decision. It was so stressful and frustrating. I didn’t understand why they had to change the system, and why they couldn’t just transfer my PIP to ADP. It seemed like a waste of time and money,” she said.
The call for action that needs to be heard
Carol finally received a letter from Social Security Scotland in February 2021, informing her that she had been awarded ADP. She was relieved and happy, but also disappointed and disillusioned that it had taken so long.
“I was glad to get the money, but I was also disappointed that it was the same amount as PIP. I had hoped that ADP would be more generous and reflect the higher cost of living in Scotland. I was also disillusioned that the Scottish Government had not delivered on their promises of making the system more fair, flexible, and accessible. It felt like nothing had changed,” she said.
Carol is one of the 50,000 Scots who have faced delays of more than three months in receiving ADP, according to the latest figures from Social Security Scotland. The agency has blamed the Covid-19 pandemic, staff shortages, and IT issues for the backlog, and has apologised for the inconvenience and distress caused to the applicants.
However, Carol and other campaigners have called on the Scottish Government to speed up the payments and improve the service, as many people are suffering from poverty, hunger, and ill-health as a result of the delays.
“It’s not fair that people have to wait so long for a benefit that they desperately need and deserve. It’s not right that people have to rely on food banks and charity to survive. It’s not acceptable that people have to live in fear and uncertainty about their future. The Scottish Government needs to act now and sort out this mess. They need to listen to the voices of the people who are affected by this, and make the system work for them,” she said.
