Should patients own their health records? | The BMJ

It’s my body and my health so why can’t I be the legal owner of my medical record? This important question was debated during a series of webinars run by The BMJ on patient access to medical records.1 Most of those involved agreed that we should be able to access all data that’s held on us, including our full medical records, but the ownership question was more contentious.

Many webinar participants saw record ownership as key to rebalancing healthcare in a more person centred direction, empowering patients to take more control of their health and data. They argued that ownership would deliver benefits in terms of the ability to control access, to check and correct errors, to record health goals and concerns, and to monitor usage through an electronic audit trail.

Others asserted that most people don’t want the responsibility of holding, managing, and maintaining their records, as long as they can access them when they need to. Some felt that defining ownership of electronic data are impossible anyway and must not be used as a ploy to derail patient access to their records, which is more important.

Patients in the UK have had a right to view, but …

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Yes, I want to see my health records not at a specific time, but as and when I wish to, so I have requested access with my GP practice, to be told access is not currently available due to safeguarding reasons. What the specific safeguarding reasons are I have not been told and no likely date when access will be granted, this I feel is an unreasonable situation, so ownership is a prime concern to me.

Is it my safeguarding or the practice.

Surely there is an infringement of my Human Rights and if it is not, it should be.

 

Source: Should patients own their health records? | The BMJ

‘It really knocks my confidence’ My life as a wheelchair user at Wales’ train stations | ITV News

Builders of train stations “need to think more about disabled people”, according to a campaigner from Cardiff

Source: ‘It really knocks my confidence’ My life as a wheelchair user at Wales’ train stations | ITV News

The pathetic harassment of Greta Thunberg by a grown man is a glimpse of the reality for disabled kids

The lives of some persons with disabilities have improved, but have they improved enough and for many there has been no improvement.

Is it not sad, that in this, now 21st centuary we are in some respects still in the sixteenth and seventeens centuary in our views and actiosns around disabilities.

In the UK we had the Equality act 2010 and before that the Disabilities Discrimination Act 1995 and still there are problems with access, in many buildings and certainly transport.

There are wheelchair spaces on public transport, at least 1 and maybe 2, but access to them may not be possible due to them being occupied by pushchairs. Even tough there have been some court cases around this, there are still some bus drivers who will not defend the right of access for persons in wheelchairs and allow the people with pushchairs to remain where they are.

In trains a disabled person, at times may be be able to alight at a station of their choice because they have not given prior notice or the station is not manned, or there is no disability access.
Access to planes is even worse.

Employment is still a major problem.

Schools the avenue for education, is still not educating pupils on disability issues and bullying, well, it is still around in abundance.

Bullying is still active within schools and the schools themselves are not tackling the problem with sufficient force, if they are , in fact , attending to the problem.
Many are solely relying on their Anti-bullying Policy, which in many instances it not worth the paper it is written on, but is used as a means to defend the school that they are dealing with it.

In fact many mainstream schools are totalyly unable to accommodate persons with disabilities, but do so with disasterous results.

People with disabilities are not going away, as they were in the 40s when they were incarcerated in institutions, in fact, even today, there are some persons who feel that was and should still be the right approach.

The number of Persons with Disabilities is increasing and they are living to an older age than before, with more persons with complex needs, mainly due to the advancement of medical science.

Modern Society, needs to get their act together and vastly improve the outlook for persons with disabilities.

In fact, there needs to be ‘zero tolerence’ with the acts of abuse occurring in every facet of Modern Society in the, so called, ‘civilised’ world.

Then we can they try to educate certain areas, in what is called the 3rd World.

Why is it called the 3rd World for who is in the 1st and then the 2nd Worlds?

Loneliness: the second cruel stigma Britain inflicts on disabled people : The Guardian

By Frances Ryan

The idea that we are different and don’t want to work, laugh in a pub, or go on a date is far too common. The result, for far too many, is stark isolation

A wheelchair-user using a ramp. ‘It’s still often impossible for us to get in a building.’ Photograph: Alamy Stock Photo

Increasingly, I feel lucky to leave the house. That’s a strange feeling for someone to have, particularly someone in their early 30s. As a millennial, I know I should be concerned with my nonexistent pension or ever diminishing chance of buying a home – and I am, really. But as a disabled person, I’m aware that nowadays even basic parts of a normal life can’t be taken for granted: going to the office, meeting friends in the pub, even regularly seeing another human being.

 Britain’s hidden scandal: the disabled people trapped in their own homes

Frances Ryan

Read more

New research from the disability charity Scope has found almost half of working-age disabled people are chronically lonely, saying they “always or often” feel lonely. Staggeringly, that works out at about 3 million lonely disabled people in Britain.

The Office for National Statistics has described Britain as “the loneliness capital of Europe” – finding that we’re less likely to have strong friendships or know our neighbours than inhabitants of any other country in the EU. Young people are said to be particularly affected.

But the Scope research points to what can only be called an epidemic of loneliness for disabled people in this country. It’s possible, of course, to be surrounded by people and still be lonely – but break down this week’s study, and this is about stark isolation. On a typical day, one in eight disabled people have less than a half-hour’s interaction with other people.

We’re rightly increasingly aware of how old age can lead to severe isolation – a recent study by the Jo Cox Commission on Loneliness found that almost three-quarters of older people in the UK are lonely – and the psychological and physical damage this can cause. However, we rarely talk about how, for a whole section of society, loneliness linked with disability and long-term health problems is a stain on decades of people’s lives. Perhaps one of the most disturbing findings of Scope’s research is how younger disabled people, like millennials generally, are affected: 85% of young disabled adults (classed as 18- to 34-year-olds) admit they feel lonely.

Beware of thinking that loneliness is some natural byproduct of disability. The strain of ill-health and disability can often lead someone to be isolated, but how society chooses to respond can either help fix it or compound it. I recently had a bad health spell that meant I was pretty much stuck in bed for two months. But even once I was better, I was very aware that – without support to leave the house or a relatively flexible job – I would still be in bed. These sorts of fears are even stronger at a time when the government is dramatically underfunding the social care system, and tightening eligibility on disability benefits.

I speak daily to disabled people who are essentially cut off from society – twentysomethings unable to go to university, and not because of health problems but because they don’t have a social care package that enables them to get to lectures. Others are forced to be “put to bed” at 8pm because their council has restricted their care slots.

Increasingly I hear from disabled readers who for years have used the Motability car scheme to do something as basic as go to the shops but who, in their tens of thousands, are now housebound after cuts saw this benefit taken away. Or wheelchair users who haven’t been outside for months because, stuck in inaccessible housing, they can’t get beyond their own front door.

Last week the Guardian’s Disability Diaries chronicled how wheelchair users have to turn down invitations to see friends because the pub or restaurant – or public transport – isn’t accessible. It isn’t exactly surprising that disabled people are isolated when it’s still often impossible for us to get in the building.

 I’m disabled and in my 50s – the fear that I won’t find a job is paralysing

Anonymous

Read more

But attitudes towards disability are also powerful barriers. Two-thirds of the British public admit that they actually feel uncomfortable talking to disabled people, according to separate Scope research. Worryingly, millennials are twice as likely as older people to feel awkward around disabled people: a fifth of 18- to 34-year-olds have actually avoided talking to a disabled person because they are unsure “how to communicate with them” – as if having a disability makes us a separate species.

It’s well established that there’s a stigma around admitting to loneliness – but for disabled people, a stigma around disability is contributing to loneliness. Imagine how lonely day-to-day life can be when the majority of the public avoid talking to you.

Whether it’s government policy removing our social care packages or a stranger ignoring us in the street, tackling this persistent idea that a disabled person is somehow different to other people – that we don’t want to work, laugh in a pub or go on a date – is going to be a crucial part of ending disability’s chronic loneliness.

Britain has a problem with isolating disabled people. Acknowledging that this actually matters is perhaps the first place to start.

• Frances Ryan writes the Guardian’s Hardworking Britain series

 

Source : Loneliness: the second cruel stigma Britain inflicts on disabled people : The Guardian

Wheelchair users forced to abandon UK summer holiday plans, says Muscular Dystrophy UK | DisabledGo News and Blog

Many major tourist destinations, must-see sights and visitor hot spots are off limits to disabled travellers because many hotels, including some big hotel

Source: Wheelchair users forced to abandon UK summer holiday plans, says Muscular Dystrophy UK | DisabledGo News and Blog

Jared O’Mara calls for action on bullying and harassment by MPs – Black Triangle Campaign

A newly-elected disabled MP is calling for action to address the bullying and harassment he has witnessed in the House of Commons, in a bid to introduce a new culture of “decorum and professionalism” into parliament.

Jared O’Mara has previously spoken to Disability News Service (DNS) about some of the access barriers he has faced in parliament since he defeated former Liberal Democrat leader Nick Clegg to win the Sheffield Hallam seat in June.

Now he is calling on the House of Commons to draw up a policy on bullying and harassment by MPs, and to carry out a regular access audit of the parliamentary estate.

Many disabled people were appalled when O’Mara – who is unable to stand for longer than five or 10 minutes – described earlier this month how he had been unable to attend a couple of debates in the main Commons chamber because there were no seats available.

But he has now told DNS that he wants the parliamentary authorities to introduce an anti-bullying and harassment policy that would prevent the kind of behaviour he has witnessed in the Commons chamber.

He said he had not been bullied or harassed directly, but had been affected by the comments and “jeering” directed against male MPs who have taken advantage of new rules allowing them not to wear ties.

The new rules are believed to have been introduced by the Commons speaker, John Bercow, after O’Mara made it clear he was unable to wear a buttoned shirt and tie because of his impairment.

All male MPs are now allowed to speak in the Commons chamber without wearing a tie, while O’Mara has also been allowed to wear a tee-shirt under a jacket.

But O’Mara said that comments made by the transport minister, John Hayes, who warned that he would refuse to take interventions from any male MPs who were not wearing ties, had made him feel “really upset and uncomfortable”.

He said he had taken these comments as “harassment”, even though they were not directed at him.

A spokesman for Hayes had failed to respond to a request for a comment by noon today (Thursday).

O’Mara said: “There has been other jeering when MPs have been not wearing a tie. It’s Neanderthal and bestial.”

He said he was also disturbed by the general “heckling and shouting” at fellow MPs that takes place in the Commons chamber during debates.

He said: “That comes under that umbrella of bullying and something I would like to take up, so people are more civilised while in the chamber and so they don’t make other people uncomfortable.”

He said that this kind of “very shrill, aggressive, intimidating environment” could cause problems for MPs who have

 

Source: Jared O’Mara calls for action on bullying and harassment by MPs – Black Triangle Campaign

Voters with learning disabilities are being excluded from this election

They’ve been deeply affected by austerity, so it’s more important than ever for people with learning disabilities to have their say on June 8.

Source: Voters with learning disabilities are being excluded from this election

Sheffield Opening Doors for Disabled People and Carers | Disability Sheffield

Some of Sheffield’s high street businesses are about to turnaround Government research that shows disabled people find shopping one of the most difficult experiences in their lives. Going to the cinema, theatre and gigs, going out for a drink or a restaurant are going to get easier.

Disability Sheffield has teamed up with Sheffield City Council and Nimbus to offer a new Access Card for disabled people and a Carers Card to anyone caring for someone in Sheffield.

As part of the Accessible Sheffield project the aim is to make life easier for people.

Andrew Crooks, a wheelchair user from Disability Sheffield, said: “The Access Cards translate people’s disabilities into symbols which show the barriers they might face and the adjustments they might need. This means people are made aware, in a discrete and quick way, about the help they might need – like access to concessionary ticket prices – without having to go into loads of detail.

Source: Sheffield Opening Doors for Disabled People and Carers | Disability Sheffield

In Britain, it’s not just the train toilets that disabled people can’t get into | DisabledGo News and Blog

For the majority of us planing an outing is not that difficult, but when a disabled person and especially a disabled person using a wheelchair, this can be a minefield.

you need to double check everything and then you can not be guaranteed that all will go to plan. For all transport needs to be adequately accessible and so do the venues and this includes the toilets. What can be stated as being accessible is many times not correct. This may not be intentional by the transport providers and the venue operators, but mainly through their ignorance of the different aspects of disabilities and the varying requirements.

Even if all are suitably accessible will there be a sufficiency of the numbers available. Bus seating being only one example for there will only be one space available and this could be already taken by standing passengers or passengers with prams, who may be reluctant to move from a disability space and I believe that there is no lawful requirement for them to do so, just respect for the disabled person or persons.

Until there is a lawful requirement to provide full disability access and the educating of the Government, business and the general public there can be no full equality for people who are disabled, for the Equality Act is not sufficient.

 

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A few years ago I met friends at a restaurant that had been getting great reviews. I triple-checked that they had wheelchair access (their website made no mention of access) and was assured that they did. Google Street View – I’d checked – showed a mammoth step, but they promised me a ramp. The ramp, as I found when I arrived, was a hastily arranged plank of wood, which they were hoping to shunt me up. Failing that, the chef and waiters would carry me – Cleopatra-style, but without the dignity. “Don’t worry,” the manager said. “The chef is very strong.” Options limited, I reluctantly agreed.

Source: In Britain, it’s not just the train toilets that disabled people can’t get into | DisabledGo News and Blog

Disabled brothers left stranded after seven drivers refused to let them board bus | DisabledGo News and Blog

Two disabled brothers were left stranded miles from home after seven different bus drivers refused to let them board together in their wheelchairs. Travis, 12, and Braydon McDowell, eight, who both have cerebral palsy, had finished a day of shopping with their carers when they were told they couldn’t use the public transport. Each of the First Bus drivers blamed regulations which prevent them from taking two wheelchair users at once – despite the fact the boys had travelled together on the outbound journey to Portsmouth city centre. The brothers father, Robert Bennett, was outraged and said the incident could have threatened their lives after they almost missed taking vital medication for their epilepsy. Mr Bennett, also of Gosport, Hants, said: “This could have been life-threatening. “They were late for their medication and this could have brought on a seizure – they could have gone into epileptic shock and needed to be hospitalised or needed their rescue meds. “The boys should be

Source: Disabled brothers left stranded after seven drivers refused to let them board bus | DisabledGo News and Blog