Everywhere you go these days you see a four-letter word you cannot escape – GDPR! Do you consent to share your data? At that point you have a choice, tick yes or tick no.

For many people with disabilities, that require care, the option to tick ‘no’ disappears.

Most people recognise that when you attend an NHS medical appointment at a hospital the data will be shared with you GP. A letter outlining what happened at the appointment is normally sent to you with a copy also sent to your GP. Results for tests done at the hospital can be accessed by any other medical professional within the same trust, so if you needed to see two consultants at the same hospital the results of any bloods tests could be crossed referenced.

This is given and accepted by many but when it comes to people with disabilities and claiming disability benefits such as Personal Independent Payments, we then often have to share all those medical notes with someone we have no idea who it is, in a centre somewhere. We have to trust our notes to go through the postal system, to reach there and have every inch of our lives looked into. We have to consent to these people at the DWP contacting our consultants. This is on top of writing down on the form every part of our lives.

How do you get out of bed in the morning, how do you get in bed at night, what do you do whilst in bed! How do you wash, how do you go to the toilet, how do you go out! There is not a part of our lives they do not want to know about. Our lives are no longer private but there written on paper for all to see.

It is not just one person that sees these notes either, it goes to one person to look through and decide if you need an assessment, if so, it goes to the assessment people, they then write up their notes and it is all passed to a decision maker. If you need a re-consideration, someone else looks at your personal details, takes all the notes down and then passes it through to the decision maker again and so it goes on.

We then go on to those, like me who need carers to get through the day. Help getting up in the morning, help during the day to keep safe, help going to bed at night and then someone to stay awake and watch over me to make sure I am safe.

To do this, again, you have to lay your life out for a social worker who wants to know everything about your life. You cannot just hand over the form you have filled in above or the decision letter, you have to go through it all again, every…. Single……. inch, of your life written down on paper again. And here comes that saying’, ‘I need you to sign here to consent to speak to your GP?’

‘What if I don’t want to?’ ‘I need to speak to them to get the information else you won’t get the care you need’

No choice! So, you tick the box. Off they go, speak to the GP, all your medical notes in their possession. They fill out their report, now it has to go to a board to decide, if I need the care and if so, how much.

They say yes you need the care, I will get a company to come and do an assessment.

Out the care company come, and you guessed it! I need to do an assessment on you, to determine what sort of care you need. ‘Can’t you take the social services report?’ You ask. We will take that, but we want you to tell us everything as well’

So, you sit for the next hour or two telling them the ins and outs of your life. You sign the contract and tick the box to say they can discuss me with my medical teams.

They go back to the office and draw all this up on a care plan, discuss it with the team in the office and then pass around to all the carers on my team. My life up there in lights for all to see.

After a few months, the care company, due to staff shortages, cannot cope with the number of hours you have, so you start looking for another agency. One agrees to come out to do an assessment. You go through everything, your life written down on paper again. Then you here, ‘I will have to go back to the office and check what availability we have before going ahead’.

You have just told this person in front of you your life, and then they advise they don’t have the staff to do the hours you require but my file will be kept in case something turns up. Great someone else with my life story.

This happens not once but two or three times, with different things, ‘sorry your needs are too complex’ ‘we don’t have staff who can drive and you are not near any travel links’.

Eventually, you find a company and think this is it. Then you get a call. I think you will be better off with a different funding body!

So out the new funding body come. Another assessment, they take notes from the social services one and from the care plan but the want the rest from you. Who are your family? Who are your friends? Who is important in your life? What is your social life, where do you go? How long do you spend there? Where will your care take place?

You get tired from putting your life down on paper over and over again…

Finally, the funding is in place, the care is in place and you think to yourself, I can finally feel like I have a private life again without it being shared with the world.

My friend that is where you are wrong. You see as a disabled person requiring care, as long support workers/Carers/Personal Assistances are in the house you will never have a private life.

Every little thing you do, you say how you act will be written down in notes, passed to a care team and then when it comes to review time for funding shared for all of them to see.  

In the past 6 months my funding body has accessed my GP medical notes eight times now. They will see every time I have visited the GP and the reason for this. They can look at my notes and see if I was sad and the reason for it. I might tell my PA something in confidence, but there is nothing stopping them keeping it confident between the office and themselves. I’ve waived my right to any privacy.

I get that these people have to check that we are not faking the system, but it gets tiring. I have to have a review for my funding every year.

It gets you down when you try to be positive about your life, but how can you when every day you have someone asking you about your condition so they can write it down to share with the world.

When everywhere you look you have someone questioning your disability and prodding into every inch of your life.

It doesn’t feel right that just because I am disabled and require care that I should waiver my rights to a private life, but that is exactly what I am being asked to do!

So, next time you see a GDPR box and have the option to tick yes or

no, think about those in the care system who only have one option. 

Written By: Victoria-Jayne Scholes