'Abandoned by the NHS, I was all alone'
Cancer patient Jane Kelly recalls her struggle to cope after a hospital sent her home too soon.
Published: 7:00AM BST 19 Jul 2010
Jane Kelly Photo: ANDREW CROWLEY Last May I was gutted like a fish. I arrived at Queen Charlotte's Hospital in west London, on May 4, for a radical hysterectomy, including a tumour on the ovary, but three days later I was back home.
For two days after my operation, nurses had one message – no one goes home until they have moved their bowels. But, the next day, a doctor appeared, moving swiftly from bed to bed without examining or questioning anyone, and declared us all fit to go home.
We were issued with a rucksack-size pack of pills, hastily instructed how to inject ourselves and shown the door.
With a large wound and a head full of morphine, I went home to an empty flat. I woke at midnight with a nagging pain, but was too weak to do anything about it. I felt lonely and vulnerable. How would I manage all those pills, the cleaning, the shopping – feeding the cat? For the first time in years, I felt truly helpless.
In the morning I injected myself in the thigh, as instructed, and tried to work out five pills. They had to be taken with food, but hours apart, leaving a long, miserable gap in the afternoons.
Friends called after turning up at the hospital to find no one there. One eventually found a nurse who told her, "She felt much better, so she discharged herself."
I felt outraged hearing this, but she pointed out that the girl spoke poor English and probably had no idea what she was saying.
There is no national standard for when people are discharged from hospital. It is all down to the doctor in charge. Gordon Brown's target of 18 weeks between GP referral and treatment put pressure on hospitals to treat more patients, faster. At the same time, bed numbers were cut, dropping by 30,000 in the past 10 years. With no free beds, the only way to meet targets was to send people home.
Recently, many hospital wards have been slyly shutting up shop at weekends. According to the NHS Confederation, which represents managers, closing wards reduces overheads by cutting back on staff. Cash-strapped NHS trusts also reduce community nursing services.
But this miserable cheeseparing hasn't worked, as 500,000 people annually are readmitted as emergency cases within 30 days of hospital treatment. A report last month showed that in 2009, hospitals received an extra £1.49 million for treating 820,395 patients who were readmitted within one month of surgery.
Two days after I got home, my wound opened. I noticed blood on my nightdress and called my GP. After holding on for 10 minutes, in tears, I discovered that home visits had gone the way of leeches.
Fortunately, I can hobble to the doctor in 10 minutes, so I wiped away my tears and set off. The waiting room was crammed. I was offered a chair in another room as there was nowhere to sit. When I saw the doctor, she looked flustered. I had disrupted her packed schedule.
She wrote a prescription, but I realised that I didn't have any cash left. I had to walk home to get my credit card, then shamble off to the chemist in the other direction. The first course of antibiotics cost £20. I suddenly realised the high cost of drugs, and I was facing a long illness. I wondered how older people cope with this abandonment and anxiety?
Figures show that the number of patients aged over 75 rushed back into hospital has risen steadily, with 159,134 in 2007-2008, compared to 147,257 readmitted in 2006, and 94,283 in 1998-1999.
I tried to apply my own dressings. Hopelessly tangled and sticky, I ran through them quickly and had to keep returning to the GP's. Where, I wondered, is Florence Nightingale when you need her, the convalescent homes we used to have, and, above all, the district nurses?
At the same time, I was trying to get a date for a final diagnosis of my cancer. Queen Charlotte's could not find my details on their computer. "They seem to have forgotten you," said a girl on the line as if it was a joke. Previously, they had not received letters from my doctor as their fax had broken.
I decided to get in touch with my cancer "keyworker". A keyworker is available to every woman who has been diagnosed with gynaecological cancer, but I hadn't expected to need her so soon. To my surprise, she told me that I was entitled to a district nurse and all cancer drugs for free.
Two days later, Emerald bustled in carrying an enormous bag. She didn't wear a uniform but had the bearing of a nurse. "They've only allotted me 45 minutes with you," she said.
I wondered why it would take that long to put a dressing on a hole the size of a 50 pence, then she brought out piles of forms. "No one has told me anything about your case," she added, "I didn't know what dressings to bring."
It was chilly lying there like a baby on a changing mat while she waded through endless questions and rummaged in her bag. One dressing took over an hour, but it was such a relief to feel just a little bit looked after.
I wondered why my own doctor didn't tell me I could see a nurse, or that cancer drugs were free? Too busy perhaps, but I have been told by doctors since then that, "In the NHS, no one connects up with anyone else."
Michelle Mitchell, charity director for Age UK, says: "There is a lack of joined-up care."
The Government published a white paper last week, stating that if a patient returns to hospital within 30 days for the same illness, hospitals will not be paid for their second treatment. This plan, called "re-ablement and post-discharge support," aims to keep patients in hospital until they are fit to leave, although that will still be at the discretion of a doctor. The new plan includes more community nurses.
But Katherine Murphy, of the Patients Association, spots a loophole. "You can't prove that the condition they are readmitted for is related to their original complaint," she says. "After being left to cope alone, people often return to hospital with new infections and breathing problems."
Nevertheless, Professor Steve Field, chairman of the Royal College of General Practitioners, is optimistic. "There is still a lot of work to be done about who will provide community nurses," he says. "But these new plans will allow us to create locally sensitive services, with the patient at the centre. This is aimed at keeping people out of hospital."
It sounds like a new start, but before anyone will be able to hear the needs of patients, GPs, nurses and hospitals will have to start listening to each other. Apart from huge reorganisation, the NHS will need better secretarial staff, faxes that work and an efficient computer system – rather unlikely in these penny-pinching times.
I was diagnosed with stage 4 ovarian cancer, and I will be having chemotherapy until September. Throughout my journey into the NHS, I have met with an alarming mixture of confusion and indifference, kindness and skill. The system is so patchy and disjointed that you never know what to expect.
I would advise anyone about to enter hospital not to wait for government plans to kick in, just fill your freezer and line up all the help you can from friends and relations. And when you are talking to anyone in the NHS, never take no for an answer.