Why did Rachel Johnston die after having all her teeth removed?

A disabled woman died after having all her teeth removed by a dentist at an NHS trust criticised for its "drastic" full extractions from other vulnerable patients.

Rachel Johnston underwent the operation after it was deemed necessary because of severe tooth decay.

But she collapsed hours after being discharged and spent days on a life-support machine in hospital, before her devastated family were told medics could not do any more to save her.

The procedure was carried out by the community dental service in Worcestershire. Two more families have told the BBC of their concerns with the service after their sons had the same "extreme" treatment without their knowledge.

In both cases, they were expecting their sons, who have learning disabilities, to have a small number of teeth removed but were left shocked when they emerged from the operating theatre with no teeth left.

Worcestershire Health and Care NHS Trust, which runs the dental service, insisted it followed the correct procedures for vulnerable patients, while three clinical commissioning groups are investigating Ms Johnston's death.

Campaigners have said they are often told of poor communication between disabled patients and their families, and that dentists should intervene earlier to avoid taking out every tooth in a person's mouth.

"There should never be a situation where such extreme treatment comes as a surprise," said Sarah Coleman, from Mencap.

A passion for singing 1980s pop star Shakin' Stevens and the computer-animated film Ice Age helped make Ms Johnston, 49, the life and soul of Pirton Grange Care Home.

But a lifetime of dental problems meant the Johnston family were told earlier this year a "full dental clearance" - the removal of all her teeth - may be needed.

"I asked if they could take a few out at a time - it seemed like a big operation - but was told they only wanted to put her under the general anaesthetic once," said her mother Diana Johnston, from Evesham.

On 26 October, her daughter, who suffered brain damage after contracting meningitis as a baby, was anaesthetised at Kidderminster Hospital for the removal of all her teeth.

Ms Johnston's temperature dropped during the procedure but after coming round she was in high spirits, her mother said, and was discharged four hours later.

The following day, care home staff phoned her mother to say she was very unwell.

"She was bleeding quite a bit and her tongue had swollen right up. But she was just lying there. It was like there was no life."

The following day she was rushed to hospital with breathing difficulties.

Her daughter was put on a life support machine but her family was eventually told there was nothing more doctors could do for her.

She died on 13 November, 10 days after the machine was turned off. A coroner is investigating.

"She was so strong - she contracted meningitis at six weeks old and doctors said if she makes it to 10 you'll have the biggest bonus," said Mrs Johnston.

"Well she got 39 more years. She fought everything that was thrown at her, which makes what happened even more difficult."

Nora Ashmore's son Kelvin had suffered tooth decay after years of problems brushing his teeth.

"He'd bite down on the toothbrush, it was very difficult," said Mrs Ashmore.

Three years ago, aged 32, he had to go to Worcestershire Royal Hospital to have some decayed teeth removed.

"I had to sign a form for them to do what was necessary," his mother recalled.

"When he went into recovery, there was a lot of blood [around his mouth]. I thought it seemed a lot for a few teeth."

Mrs Ashmore said a man and woman then told her all her son's teeth had been taken out.

"I said 'pardon?' I couldn't believe what they were saying. I was so shocked."

Mrs Ashmore said she felt the procedure was "so radical, so drastic".

"If they'd have said beforehand 'we think this is the best way forward', I might have understood.

"It's something we've tried to forget. You think 'they must know best'."

It is a situation familiar to Debbie and Jon Perry. Their son, in his 30s, also had all his teeth taken out by the trust around the same time as Kelvin.

They said they were expecting him to have a deep clean, some fillings and a few extractions.

"We signed some documents but they didn't tell us they were going to take all his teeth," said Mrs Perry.

"We were very shocked," her husband added. "He was very distressed. He was looking at us, like, 'what have they done?'"

"It's affected him a lot. He's got no confidence now, doesn't want to go out on days out, holidays, anything," said Mrs Perry.

There are many reasons, including behavioural problems that affect teeth brushing, gastric reflux, and some chromosomal disorders.

The NHS runs community dental services around the UK to look after people who find going to the dentist difficult.

Dentists must obtain informed consent before carrying out treatment but some patients do not have the mental capacity to do this.

A dentist will assess the patient's capacity in line with principles set out in the Mental Capacity Act (England) 2005, said Charlotte Waite, who chairs the British Dental Association's England Community Dental Services Committee.

"Where patients do not have this capacity, the dentist may provide treatment in the patient's best interest," she said.

"The legislation states that dentists should provide treatment that is the 'least restrictive of the patient's rights and freedom of action'."

It is not always possible to complete a full examination of a patient's teeth before they undergo anaesthetic.

"In those cases, the dentist should usually discuss the potential possibilities with all the appropriate people involved in making a decision that's in the best interest of the patient," said Ms Waite.

Decisions sometimes have to be made in the treatment room because dentists do not want to pause a procedure while a patient is under anaesthetic, a spokesman for Worcestershire Health and Care NHS Trust said.

Dentists do not want to risk patients being anaesthetised several times, so in some cases decide to remove non-restorable teeth to avoid this, said Rod Smith, Associate Medical Director for Specialist Primary Care.

"The consent process is clear that fillings would be done if the teeth are restorable, with extractions carried out if not, and that ultimately the aim is to render the patient dentally fit at the end of the procedure," he added.

"The feedback we receive across our community dental service is very positive but we will always listen to patients and families to see if there is more we can do to ensure their experience is a positive one."

In the case of Ms Johnston's death, a spokesperson for the three Worcestershire CCGs said: "Whilst it would not be appropriate for us to discuss the details of any specific case, we can confirm that all relevant agencies are committed to work together to share the facts and review the circumstances leading up to a recent case of the death of a person with a learning disability."

"Sadly, it is very common for there to be a lack of communication between healthcare professionals and people with a learning disability and their families," Sarah Coleman, Mencap's health policy officer, said.

"More must be done to ensure people with a learning disability can access good quality dental care as soon as they need it, before we reach the point where multiple teeth need to be extracted.

"People with a learning disability deserve the same quality of treatment and care as anyone else, and it's simply not good enough when they don't get it.

"Making a best interest decision on a matter such as whether to give a general anaesthetic, or to remove teeth, is extremely serious and requires careful consideration."