Why are care houses refusing to inform kin how family members died? MP says NHS could also be breaking legislation

The daughter who can’t discover out when her mom was recognized with dementia. The grieving husband determined to know the way his spouse died – however blocked from studying her hospital notes. The son who could also be compelled to take his late mum’s hospice to courtroom – as a result of they refuse at hand over her medical data.

These are only a few of the heartbreaking tales from individuals who have been denied very important details about their useless kin.

Last week, The Mail on Sunday’s resident GP Dr Ellie Cannon requested readers in the event that they’d been blocked from accessing deceased family members’ paperwork. We obtained a flurry of emails, with individuals claiming that GP practices, hospitals, care houses and hospices are refusing at hand over essential information.

In many instances, households request the information after they imagine their late relative might have been failed by their healthcare supplier – and the reluctance of bureaucrats to share them will increase suspicion that there’s something to cover.

‘It is regarding to listen to that households are struggling to entry medical notes that they’re entitled to,’ says MP Dr Caroline Johnson, a member of the Health and Social Care Select Committee. ‘An NHS service which is refusing at hand over these data could also be breaking the legislation, and there’s no excuse.’

Family members should not routinely entitled to see the medical data of a deceased liked one. Confidential data stay confidential even after loss of life, however there are particular the reason why a relative could also be allowed to see these notes.

If an individual is known as in a will as an executor – making them legally chargeable for finishing up the affected person’s directions, reminiscent of dealing with cash, property and possessions – it additionally means they will entry medical data. The legislation additionally permits entry to those that want the data for authorized functions, for instance, if they’re suing the NHS for malpractice.

But even in these circumstances, requests are being blocked by healthcare suppliers, claiming, wrongly, to be for privateness causes.

One lady from London advised the MoS how care residence workers refused to share her mom’s medical data regardless of having supplied the mandatory authorized paperwork.

‘My mom had obtained poor care in a earlier residence, so I wished to ensure she had been handled effectively in her last days,’ says Patricia Myers, 74, who was the executor of her mom’s will. ‘It appears like care houses are deciphering the legislation as they wish to make their lives simpler.

‘I do know many individuals who’ve been in the identical scenario. Grieving individuals can’t discover out what led to the loss of life of their liked one.’

In a number of instances, this newspaper heard of households drawn into courtroom battles to entry these very important paperwork, which is commonly prolonged and prohibitively costly.

Anthony, 47, from Maidenhead, has been preventing to get his mom’s medical data for the previous three years. His mum, Katie, a retired librarian, died in the summertime of 2020 on the age of 76 after a sudden most cancers analysis.

She spent her final months in a hospice, however Anthony claims the household weren’t advised how shortly she was deteriorating. ‘The day earlier than my mom died we have been out on the lookout for a care residence to place her in, as a result of the hospice had stated there wasn’t area for her there,’ says Anthony. ‘But absolutely the medical doctors knew she didn’t have lengthy? I simply need some readability about what they knew.’

Despite being named as Katie’s executor, the hospice refused to provide Anthony her medical data.

He filed a grievance with the Health Ombudsman however the service stated it didn’t have the facility to power a handover of paperwork and that he must go to courtroom to get her data. ‘I’m unsure I can afford a lawyer,’ he says. ‘All I need is to know what occurred to my mom. Why is that so troublesome?’

However, it additionally seems many individuals are unaware of what entry rights they should the medical data of family members. Quite a lot of readers wrote in to say that they’d not realised they weren’t legally allowed to see their deceased relations notes.

James Cole, 73, from Bradford, by no means anticipated to be denied entry to his spouse’s data after she died. Evelyne, 71, handed away in 2021 after catching Covid in hospital.

According to James, a retired environmental well being officer, his spouse was discharged from hospital whereas she was nonetheless contaminated – despite the fact that she suffered with circumstances which meant she was clinically weak to extreme Covid sickness. Every week later she collapsed at residence, and was taken again to the hospital the place she died.

‘We wished to undergo the medical data to grasp why they despatched her residence with Covid when she had a number of critical well being issues,’ he says.

But the hospital refused to grant James entry to the notes as a result of Evelyne didn’t have a will, so there was no named executor. In the absence of a will, even a partner just isn’t routinely given this standing.

James says: ‘My spouse didn’t have a will as a result of she had nothing to depart. Our home was collectively owned, so it by no means got here up.

‘I perceive the necessity for confidentiality, however I feel this can be a gray space – I ought to have the correct to see her data.’

Experts argue that the foundations exist as a result of it’s important that the data is intently guarded.

‘Doctors have an obligation to guard the privateness of their sufferers, even after they die,’ says Dr Dean Eggitt, a Doncaster-based GP. ‘There are loads of issues that somebody would possibly inform their physician in confidence that they won’t need their household to seek out out. So there must be a transparent authorized cause to see these data.’

Experts say all adults ought to write a will and identify an executor – often known as a private consultant – even when they’re wholesome.

‘Not sufficient individuals have a will ready after they die, and that’s actually because they don’t realise it’s not nearly passing on cash,’ says Stephen Clarkson, affiliate solicitor at legislation agency Leigh Day.

‘If you’re not named in the one you love’s will as their executor or private consultant, then it’s a really difficult course of to make this proper after they’re gone.’

Chris Rodwell, 79, from Surrey, was shocked when the hospital the place her mom died refused to inform her whether or not or not she’d had dementia. The former air stewardess says her mom died of most cancers over a decade in the past, however the household suspected she was additionally struggling dementia, because of her confusion and forgetfulness.

‘My husband and I wished to know whether or not within the weeks main as much as her loss of life she’d been recognized with dementia, so a couple of years again I known as as much as ask.

‘I used to be utterly stunned after I was advised that this info was non-public. I used to be her solely daughter and I taken care of her, so I felt like I ought to be capable of know.’

Experts say the very best plan of action is commonly to contact a solicitor, who can write a letter to the healthcare supplier requesting the paperwork for authorized causes.

‘When a request for medical data has a solicitor’s identify on it, the hospital tends to conform,’ says Mr Clarkson.

‘We can then undergo the data with the member of the family and resolve if there’s something regarding in there which may benefit a authorized case.’

Some names have been modified on this article.