The woman fighting for her life as well as patient's rights (From Worcester News)

The woman fighting for her life as well as patient's rights

9:44am Wednesday 12th August 2009 in James Connell By James Connell

The woman fighting for her life as well as patient's rights

JANIE Thomas combines two qualities which many would consider essential in the world of healthcare – compassion and toughness.

But she is not a doctor or a nurse; she is chairman of the Patient Panel, a group set up to battle for better care for patients in Worcestershire.

The first quality is evident straight away but the second only emerges after you realise how much she has been through and how much she has achieved in spite of it.

Janie has had two mastectomies, in 1980 and 1992, and when the cancer spread to her lungs in 1995, she was given a terminal diagnosis.

She has faced the sometimes exhausting ordeal of chemotherapy, the loss of the career she loved and the emotional rollercoaster of terminal illness, from the anguish of diagnosis to the short-lived joy of remission.

There are few people better placed to know what it is like to be a patient.

She said: “I gave up my teaching.

I gave up everything. I could hardly even get up. I was in bed and coming down for maybe one or two hours and that’s all I could do, nothing else. My husband was told I only had a few months, possibly weeks, left to live.”

But slowly, and in defiance of medical predictions, she began to recover and after 12 months of chemotherapy she was able to leave the house.

Mrs Thomas, aged 61, of Hillgrove Gardens, Kidderminster, loved her job as head of biology at Haybridge High School in Hagley but as she could not return in the wake of her illness she decided to channel her energies into something else.

To begin with, she was not sure what to do. She thought of being a magistrate or a prison visitor but more and more it was the world of healthcare and the needs of patients which drew her attention.

She said: “I thought I’m not going to die just yet and I wanted to give something back to the National Health Service. I can’t say I was very impressed with the NHS at that time, although it has definitely improved.”

The Government had decided at the time that there should be more input from patients into the healthcare they get at hospitals, doctor’s surgeries and minor injuries units.

She started off as part of a patient group for Stanmore House Surgery in Kidderminster, which has already listened to patients’ views – the layout of the surgery was even changed to make it more suitable to their needs.

But she eventually became involved in the Patient Forum, formed in Worcestershire in 2004 on the back of new government policy.

But in the ever-shifting sands of politics, the Government is now behind the introduction of Local Involvement Networks (LINks) across the country as part of plans to phase out these Patient Forums.

However, a delay in setting up the LINk group locally meant that Mrs Thomas thought it prudent to set up the Patient Panel in the meantime so patients were still represented before the new group officially came into being.

Mrs Thomas is determined it should keep running despite the birth of the LINk group.

She is critical of what she regards as the confusion caused by replacing what she saw as a good working system for representing patients with a completely new one.

She said: “I think patients can have a lot of power. You have to have a group of people thinking from a patient’s perspective even if it’s just where the coffee machine is going to go. We’re always asking questions. There were no disabled spaces at the minor injuries unit and the out-of-hours service in Kidderminster. Now there are.”

The Patient Panel is not simply a talking shop – it was consulted over the appointment of Take Care Now (TCN) as the private company that provides Worcestershire’s out-ofhours service, and the appointment of Elgar Healthcare to run the Worcester walk-in health centre in Farrier Street, Worcester.

When the Patient Forum, the organisation which gave rise to the Patient Panel, was formed in 2004 it also had powers to walk into any NHS establishment unannounced, including doctors’ surgeries and acute and community hospitals.

As a former teacher, it is not surprising that Mrs Thomas is passionate about getting children involved in the future of Worcestershire’s healthcare.

She involved youngsters in a study to show how many medicines were wasted after they were returned to pharmacies in the Wyre Forest part of Worcestershire, amounting to £638,000 in 2004.

Another idea of hers was the health train which involved using the Severn Valley Railway as a moving base for experts including diet specialists, community nurses and experts on blood pressure, smoking cessation and diabetes.

The event in March 2005 sold 300 tickets and Mrs Thomas said it raised awareness of a wide range of heath issues across the county.

Mrs Thomas is now battling to have Worcestershire served by three cancer networks for radiotherapy provision.

Her work has also won her recognition from the health service itself. She was presented an award for outstanding achievement by Paul Bates, chief executive of NHS Worcestershire.

Mrs Thomas’ cancer returned in April last year to her abdominal area and she lost her hair after undergoing chemotherapy.

She said: “They know they can’t cure it. The way they put it was, ‘We will try and give you some time’. You just fight the cancer and try your best. It just makes me even more passionate about patient care.

“A lot of people don’t realise that they have a finite time on this Earth. They don’t realise they’re going to die. If you do realise you only have a certain amount of time you have to choose how to spend it wisely. I can honestly say that I have no regrets.”

Her hope now is that a new generation can continue the work she and others have begun.

“The health service is as good a thing as anything to get involved in,” she said.

“It affects so many people. It affects us all.”

Picture Caption: FIGHTING: Former teacher Janie Thomas is passionate about making the health service work better for patients – and as a cancer sufferer she has a better knowledge of the subject than most.