David Streeter met with one of our customers to talk about her journey to managing her own health and social care support.

Aunty June has run out of walk. That’s how June Williams’ bubbly great- nephew describes the impact of her post-polio syndrome. June put it to me another way: My muscles feel like a worn out rope which has been used for far too long. June, and her husband John, both agree that their nephew’s description is a better fit.

June, now 82, and John, 85, have been happily married for 62 years. Four years after they wed in 1954, June contracted polio. She was 28 weeks pregnant with her second child. Doctors believe she contracted the virus as a result of the vaccination of her 20 month old daughter – an active type of the disease was used in the vaccine, which was relatively common at the time.

Shortly after contracting the virus, June was admitted to Foredown Isolation Hospital in Portslade. She was there from 6th June until 6th November 1958 – five months. On 29th June, whilst in hospital, she gave birth to her second child who was born completely healthy. I can see a smile forming on June’s face as she tells me this, reliving the relief even now.

After leaving the hospital, June was transferred to a sanatorium in Hampshire – a hospital mainly used to treat people with tuberculosis. She spent a further five months there for rehabilitation.

June stops me at this point and asks me to make sure I take a note of the terrible conditions in the sanatorium – apparently there was nowhere else for her to go, but being on a tuberculosis ward she wasn’t allowed visitors for the entirety of her stay – including her newly born son.

Finally, on 6th April 1959, ten months after she was first admitted to hospital, June was allowed to return home. As I ask June how it felt finally to be home, her voice begins to tremble.

I felt institutionalised. My children only knew me through photographs. I was a complete stranger to them. I was heartbroken.

Now home, June’s mother and husband took on the roles of her primary carers. For eighteen months they did everything for her; she says “she owes them the world”. Finally, over two years since June was first admitted to hospital, she started to regain some independence. With the aid of crutches she was able to make her way around the house on her own.

Over the next ten years, June slowly began to recuperate, able to walk further and further every year. In 1972 June felt she was well enough to pursue work. She found a job in a local factory making jewellery, a job she tells me; helped more than all of the rehabilitation I ever had to get me back on my feet.

Things were looking up! June’s health continued to improve, her polio experience was finally fading into the past.
But in 1980, still working at the factory eight years later, June collapsed at work. She was rushed to hospital and doctors discovered that the oxygen count in her blood was at a shockingly low 58%.

All of the doctors were very excited. Apparently I was quite a remarkable case she tells me. It wasn’t long before June received the news that her low blood count was caused by post-polio syndrome – she would have to stop working immediately.

Post-polio syndrome is one of a few conditions which can affect people who have previously contracted polio. In June’s case, it resulted in de-oxygenation of her blood, and a gradual, progressive deterioration in her muscles and joints. June says the news came as a shock.

After twenty years of polio becoming a memory, and only a memory, it suddenly felt that once again it would dominate my life.

It was around this time, in 1982, that June first began to receive Disability Allowance, the first official support she’d ever received. For two years she and her husband were living just off of John’s income. I asked June what it felt like to receive her first payment of Disability Allowance. She simply said, It put jam on the bread.

The support June received from 1982 until 2007 was prescribed to her. She didn’t have a say in what she received or how it was delivered. Other people decided for her. June is quick to point out; that by no means was I ungrateful, it was absolutely wonderful, I just had no control over any of it. Her life felt as though it was dictated to her for twenty-five years.

In 2007 things changed. June applied to receive her Personal Budget as a Direct Payment of her to pay for her care and was successful. She was now able to choose what support she received, and how and when she received it.

Until this point she had been told when carers would be in her house and she had to fit her life around them. Now her life was back in her own hands.

She now directly employs two people to support her every morning, and has recently decided to employ another person to come in every evening. A far cry from when she first left hospital in 1959 when the only support she could hope for was from her mother and husband!

Now, thanks to the flexibility of her budget, June and John are planning a trip to Cornwall. They’ve found an adapted barn which suits their needs, and have been able to use the Direct Payment to employ support workers to visit the barn and to provide the same support June receives when she’s at home – something they could only have dreamed of before they had the control they do now.

To end our conversation, I asked June and John how they feel the budget has affected their lives. John answers immediately;

June’s budget, and the control we have over it, has allowed us to stay together. This is the most supported June has ever been, things couldn’t be better. Without this, I would be visiting June in a nursing home.