The daughter who can’t know when her mother was diagnosed with dementia. The grieving husband was desperate to know how his wife died but was prevented from reading her hospital notes. The son who may be forced to take his late mother’s hospice to court because they refuse to hand over her medical records.
These are just some of the heartbreaking stories of people who have been denied vital information about their deceased relatives.
Last week, The Mail on Sunday’s resident GP Dr Ellie Cannon asked readers if they had been blocked from accessing their deceased loved ones’ documents. We have received a deluge of emails, with people claiming that GP surgeries, hospitals, care homes and hospices are refusing to hand over important data.
In many cases, families request the records when they believe their health care provider may have failed their deceased relative, and bureaucrats’ reluctance to share them increases suspicion that there is something to hide.
“It is worrying to hear that families are struggling to access the medical notes they are entitled to,” says MP Dr Caroline Johnson, member of the Health and Social Care Select Committee. “An NHS service that refuses to hand over these records may be breaking the law and there is no excuse.”
People have claimed that GP surgeries, hospitals, care homes and hospices are refusing to hand over important details about their deceased relatives.
“It is worrying to hear that families are struggling to access the medical notes they are entitled to,” says MP Dr Caroline Johnson (pictured), member of the Health and Social Care Select Committee.
Family members do not automatically have the right to see the medical records of a deceased loved one. Confidential records remain confidential even after death, but there are specific reasons why a family member may be allowed to see these notes.
If a person is named in a will as an executor, which makes them legally responsible for carrying out the patient’s instructions, such as handling money, property and possessions, it also means they can access medical records. The law also allows access to those who need the information for legal purposes, for example if they are suing the NHS for negligence.
But even in these circumstances, healthcare providers block the requests, claiming, wrongly, that they are for privacy reasons.
A London woman told the Ministry of Health how care home staff refused to share her mother’s medical records despite providing the necessary legal documentation.
“My mother had received poor care in a previous home, so I wanted to make sure she had been treated well in her final days,” says Patricia Myers, 74, who was the executor of her mother’s will. ‘It seems as if care homes are interpreting the law as they would like to make their lives easier.
‘I know many people who have been in the same situation. Grieving people cannot discover what caused their loved one’s death.’
In several cases, this newspaper heard of families involved in court battles to access these vital documents, which is often lengthy and prohibitively expensive.
Anthony, 47, from Maidenhead, has been fighting to obtain his mother’s medical records for the past three years. His mother, Katie, a retired librarian, died in the summer of 2020 at the age of 76 after a sudden cancer diagnosis.
He spent his final months in hospice, but Anthony claims the family was not told how quickly he was deteriorating. “The day before my mother died, we were looking for a residence to put her in, because the hospice had said there was no room for her there,” says Anthony. —But surely the doctors knew that she didn’t have much time left? I just want some clarity on what they knew.
Despite being named Katie’s executor, the hospice refused to give Anthony her medical records.
He lodged a complaint with the Health Ombudsman, but the service said it had no power to force the handover of documents and he would have to go to court to obtain his records. “I’m not sure I can afford a lawyer,” she says. ‘All I want is to know what happened to my mother. Why is so difficult?’
However, it also appears that many people are unaware of what access rights they have to their loved ones’ medical records. Several readers wrote to say they didn’t realize they didn’t have legal permission to see their deceased relatives’ notes.
James Cole, 73, from Bradford, never expected to be denied access to his wife’s records after her death. Evelyne, 71, passed away in 2021 after contracting Covid in hospital.
Last week, The Mail on Sunday’s resident GP Dr Ellie Cannon asked readers if they had been blocked from accessing their deceased loved ones’ documents. We have received a deluge of emails, with people claiming that GP surgeries, hospitals, care homes and hospices are refusing to hand over important data (care home file photo)
According to James, a retired environmental health officer, his wife was discharged from hospital while still infected, despite suffering from conditions that made her clinically vulnerable to severe Covid illness. A week later she collapsed at home and was taken back to the hospital where she died.
“We wanted to review medical records to understand why she was sent home with Covid when she had several serious health problems,” he says.
But the hospital refused to allow James access to the notes because Evelyne had no will, so there was no appointed executor. In the absence of a will, not even the spouse automatically receives this status.
James says: ‘My wife didn’t have a will because she had nothing to leave. Our house was jointly owned, so the topic never came up.
“I understand the need for confidentiality, but I think this is a gray area: you should have the right to see your records.”
Experts maintain that the rules exist because it is vital that information is jealously guarded.
“Doctors have a duty to protect the privacy of their patients, even after their death,” says Doncaster GP Dr Dean Eggitt. ‘There are many things that someone could tell their doctor in confidence that they might not want their family to know about. “Therefore, there has to be a clear legal reason to view these records.”
Experts say all adults should write a will and name an executor (also known as a personal representative) even if they are healthy.
“Not enough people have a will prepared when they die, and that’s often because they don’t realize that it’s not just about passing on money,” says Stephen Clarkson, associate attorney at law firm Leigh Day.
“If you are not listed in your loved one’s will as their executor or personal representative, then it is a very complicated process to do this immediately after their death.”
Chris Rodwell, 79, from Surrey, was shocked when the hospital where his mother died refused to tell him whether she had had dementia or not. The former flight attendant says her mother died of cancer more than a decade ago, but the family suspected she also suffered from dementia because of her confusion and forgetfulness.
‘My husband and I wanted to know if she had been diagnosed with dementia in the weeks before her death, so a few years ago I called her to ask.
‘I was completely taken aback when I was told this information was private. I was her only child and I looked after her, so I felt like I should be able to know.’
Experts say the best course of action is usually to contact an attorney, who can write a letter to the healthcare provider requesting the documents for legal reasons.
“When a request for medical records has a lawyer’s name on it, the hospital tends to comply,” Mr. Clarkson says.
“We can then review the records with the family member and decide if there is anything concerning that might merit a legal case.”
Some names have been changed in this article.