Tessa Jowell’s lasting legacy for brain tumour patients as Leeds Teaching Hospitals awarded ‘centre of excellence’ status

Tessa Jowell’s final campaign was to try and transform brain tumour treatment. Now awards by her organisation for nine clinics - including one in Yorkshire - aim to improve care across the UK. Lisa Salmon reports.

Jess Mills and her late mother Tessa Jowell. Picture: Alice Aedy/PA.

Although brain tumours are relatively rare, around 12,000 people are diagnosed with one in the UK every year – including celebrities like singer Russell Watson, musician and actor Martin Kemp, and The Wanted singer Tom Parker.

The politician Baroness Tessa Jowell was another public figure who had a brain tumour; she died in 2018, aged 70, a year after being diagnosed. Before her death, Jowell made it clear she wanted to help transform brain tumour treatment, research and survival to ensure all patients received the best possible care.

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Three years on, her dream is becoming a reality, as the Tessa Jowell Brain Cancer Mission (TJBCM) – the organisation set up in her name – has awarded nine neuro-centres around the country ‘Tessa Jowell Centre of Excellence’ status, recognising the outstanding care and treatment they deliver.

Sarah Lindsell, CEO of The Brain Tumour Charity. Picture: The Brain Tumour Charity/PA.

Among those to be selected for the award is Leeds Teaching Hospitals NHS Trust.

Jowell’s daughter Jess Mills, co-founder of TJBCM, says her mum’s goal was to tackle systemic inequality.

“Her final campaign was to create universal equality in access to excellence in cancer care throughout the NHS.

“It is with immeasurable pride that just three years later, we’ve begun the translation of that vision into reality,” she explains.

“Shockingly, the UK still has one of the worst cancer survival rates in Europe, but in time, the Tessa Jowell Centres will make the UK a global leader in the treatment and care of brain tumour patients. We have a long way to go, but this is a huge first step.”

Around 150 patients per year seeking treatment for brain tumours at the Leeds Teaching Hospitals NHS Trust and its work was measured on a range of criteria to be eligible for the award.

It was assessed in areas like clinical practice, emphasis on patients’ quality of life and the standard of its research opportunities.

Led by a committee of experts in the field and virtual site visits, the assessments were backed up by patient feedback about the care they received.

When the award was announced earlier this month, Professor Susan Short, Clinical Oncologist at Leeds Teaching Hospitals, said: “We are immensely proud of the excellent care delivered by the whole neuro-oncology team in Leeds and very pleased to be able to contribute to a national effort to improve the experience of all brain tumour patients through designation as a Tessa Jowell Centre of Excellence”.

Dr Catherine McBain is a consultant clinical oncologist at The Christie in Manchester, another one of the hospitals to be named a Tessa Jowell Centre of Excellence.

She stresses: “While all neuro-centres provide high quality care, the nine designated centres are recognised for going above and beyond for their patients.

“While a brain tumour diagnosis can be devastating, patients should feel confident that across the country, NHS staff are working hard to provide the best possible care today, while working on the treatments of tomorrow.”

Sarah Lindsell, chief executive officer of The Brain Tumour Charity, says the Tessa Jowell awards are “a major step forward in driving up standards for brain tumour patients.”

Lindsell adds: “Early detection remains a critical and unique challenge in brain tumours.

“The signs can sometimes be vague and many of the most common symptoms, such as persistent headaches or coordination problems, can have a variety of other causes, which may or may not be serious.

“We would encourage anyone experiencing symptoms that are unusual for them – and particularly if they experience a combination of symptoms, or if these signs are persistent or unexplained – to be checked by a GP.”

Dr McBain explains that symptoms which may suggest a brain tumour tend to be changes which develop and get worse over a period of weeks to months, with additional symptoms also developing in that time.

“Other than a seizure, which may occur on its own, most people will have a combination of symptoms, which develop and become more noticeable over a period of two to three months,” McBain says. “That’s the situation that should cause you to talk to your GP.”

Dr McBain says there are seven possible symptoms to look out for which may be linked to brain tumours. 

The first is seizures, with the second being weakness of a face, arm or leg on one side of the body.

Such weakness may come on suddenly, like a stroke, or may become more noticeable gradually over a few weeks, for example dragging your leg or tripping over kerbs because you don’t seem to be able to lift your foot up properly.

Another potential symptom is marked speech disturbance; slurred speech, being unable to find your words or coming out with the wrong words.

Struggling to find a word sometimes is normal; but it would become worrying for a brain tumour if it was becoming steadily worse over a period of weeks or months and was associated with other symptoms.

Something else to look out for is a change in personality. People who have a brain tumour may become steadily more withdrawn or confused over a period of a few months, or struggle with tasks they used to be able to do, such as playing an instrument or doing internet banking.

Brain tumours can also cause vision changes. Sometimes, tumours in the brain reduce our ability to see objects to one side. This might cause people to bump into doorframes, not be able to see someone sitting on the left or right side, or clip the wing mirrors of parked cars if driving. If you’re concerned about vision changes, begin by seeing an optician, who can perform a full eye test and refer you to hospital if necessary.

Another potential symptom is difficulty reading or interpreting words.

You may notice that over a few weeks, you’re increasingly struggling to write emails or send texts, or to work out what subtitles or words in a book say – you may be able to see the words clearly, but the brain refuses to interpret them or make sense of them.

Headaches are also another warning sign in certain circumstances. Headaches are the symptom most people associate with brain tumours, but it’s actually relatively unusual for headache to be the only symptom of a brain tumour.

When it comes to being concerned about brain tumours, doctors talk about ‘headache plus’, meaning headache plus other symptoms. Worrying headaches are those which have become ‘clearly, definitely and progressively worse’ over a period of two to three months, and which become associated with some of the other symptoms.

If headache is the only symptom, it’s usually a headache which is different to any headache you’ve ever had before, and which becomes much more severe very quickly, over a period of a few weeks. It may be present in the morning, waking you from sleep, or become associated with nausea, vomiting and drowsiness.

Awards ‘a fitting tribute’

NHS England’s national cancer director Cally Palmer says the award of centre of excellence status to Leeds and other hospital trusts is a cheering but poignant moment.

“This award is a fitting tribute to Tessa Jowell and her dedication to excellence in cancer care, as well as to all the NHS staff who have worked tirelessly throughout the pandemic to continue to provide life-saving cancer services, and it is great to see NHS hospitals across the country being recognised as centres of excellence.

“NHS services are open and ready to help those who need cancer care, and I encourage anyone who is experiencing any worrying symptoms to contact their GP immediately to improve chances of a successful recovery.”

For more information, visit www.thebraintumourcharity.org

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