Health/care.data

NHS care.data

The state of care.data is a unbelievable and sorry tale. The more you look into it the more you think something is seriously missing. Its almost like the UK government want to sell off the NHS in return for an American style health care system (tin foil hats at the ready). I would suggest thats not the extreme view it sounds like, going by the mess which is on the table.

Following getting the NHS leaflet telling me I have a choice about where my medical records exist and the stellar work the likes of the Open Rights Group and others have done. I decided to look a little deeper into what is care data? I went to Threats to your medical confidentiality as I wanted to understand the other side which seemed to be hidden from public view.

What I found was something almost acute to the practice of health care.

The NHS will be legally barred from selling personal medical records for insurance and commercial purposes in a new drive to protect patient privacy, the Health Secretary will announce next week. Jeremy Hunt will unveil new laws to ensure that medical records can only be released when there is a “clear health benefit” rather than for “purely commercial” use by insurers and other companies.

Its important to note these facts…

  1. Care.data has nothing to do with medical care, you will get the same care regardless
  2. This is all about extracting confidential medical information from the GP-held records. Once they have it will never be deleted
  3. Identifiable data can/will be sold to almost any company. Medical research will get another slice regardless
  4. There is no medical lost from opt-ing out, this is all about access to data
  5. You can opt-out using a form or using the new FaxyourGP service but you can also opt-out people you look after/care for or are dependent on you (like your children for example)

To make things worst if you did decide to opt-out (remember its your lawful right to do so) the NHS made it extremely tricky to do so, they finally gave us 6 months more to decide.

Awwww what nice people… Nothing to do with ill thought-out communication or patient data going to insurance companies. No of course not… Whats also shocking is the lack of mass publicity this is not getting.

Me personally, once fax your GP is back will be using that service to make sure I’m opt-ed out, unless something dramatic happens. Even got a google task to remind me to opt-out…

All your care data belongs to us?

I have been looking into the health care data sharing thing in the UK a while ago but to be honest got distracted by the mass surveillance uncovering from Edward Snowden’s leaks. Luckily the Open Rights Group is keeping their watchful eyes on this issue along with many others.

I’m still making up my mind and reading about the positives and negatives, to see if I should opt out. Don’t get me wrong, I’m a public person for many things but certain things I like to keep private. I’m still learning more but I had planned to join one of the Open Right Group’s mass opt out meetups to understand a little more.

However Stefan Magdalinsk just launched #FaxYourGP.

We’re a very small group of volunteers who think it should be very easy for people to opt out of the new NHS care.data centralised database of medical records. Unless you opt out now, care.data will soon store the medical records of everyone in England, yours included, in one giant database. Our confidential health information will then be shared with companies and other public bodies.

Some people we respect think care.data is, on balance, a good thing.

Some people we respect think care.data is, on balance, a bad thing.

What we know for certain is that the NHS hasn’t made it easy for you to exercise your right to opt out. We think this really isn’t wise. The NHS leaflet explaining care.data says you should ‘let your GP know’ if you want to opt out. But GP surgeries are busy. If you ring up wanting to opt out they’ll ask you to write to them instead. That’s fair enough – their priority is treating the sick. It’s 2014. The NHS really should have made it easy to opt out via the web.

And thats the point really… Choice! It should be a educated choice not forced upon us.

As I weigh everything up, you can opt out really quickly using Stefan’s service and the envelope below. As Tim would say, Amazeballs…



writetothem.com

A letter to the hospital

My ex-wife rewrote my rant about the Hospital into something official sounding. I think you will agree its much better that my efforts. It sounds kind of weird my ex-wife helping me out like this but shes been excellent the last few weeks helping out where ever she can. So we’ve really made up and who knows we may actually be friends following this. Its a shame it took this to get us to talk but its a positive which has come out of this whole experience. I even met her little son the other day which is slighly scary because I didn’t know quite what to expect.

Anyway, here’s the letter we’re using for the complaint to the hospital (I’ve been told not to put the name of the hospital, just in case they are checking the internet for complaints or something) If you’ve been paying attention, you will know which hospital it is…

Following my verbal complaint at my discharge on 17 June 2010, I am putting my concerns in writing so as to be clear about the matters I believe need attention and/or investigation.

1. Lack of information to family members in ICU

My family was unhappy with the amount of communication during my stay in ICU. Some nurses would come along and do things but not tell my family what they were doing or why. My parents received next to no information about what had happened to me or what my prognosis was. In one instance, my mother was treated to an inappropriate lecture about hospital pay instead of getting an update on my condition. They were not encouraged to ask questions and generally felt uncomfortable approaching some of the staff. The consultant was never available and my family ended up having to book time with him several days in advance just to be able to speak to him. They (and I) feel more should have been done to make sure they understood what was happening.

2. Problems with ward management

After I left ICU, I was moved twice within two days which was very unsettling. It seems that no one knew quite where to put me, so the first ward I went to proved to be unsuitable, and in the ANU I was with people who were pre-surgery while I was recovering. Maybe there isn’t really a suitable ward for my situation, but I would have thought it made more sense for me to be with other people who are recovering from surgery (oppose to a medical ward). I also did not receive any sort of ward orientation and was not advised until several days into my stay that I was permitted to leave the ward.

One particular problem with my ward was another patient who needed constant care and attention and didn’t receive it from the staff. As a patient, I should not have to look after other patients, but I felt obligated to help as the patient next to me was constantly trying to get out of bed (risking a fall), trying to pull his tubes out, and asking me ‘when are we going?’ On most days, I had to call the nurse to deal with him several times, sometimes every five minutes, to stop him from hurting himself. I found this very stressful and certainly not what I needed with my already high blood pressure.

3. Missing medication

The most serious complaint I have about my time at the hospital is that I was not given my medication, though it was signed off in the chart that I’d received it. On 16th June the chart was signed in the morning, but I am certain I did not have the pills. There was one pill that was very bitter, and I have to be awake to take it, so I am absolutely positive it was not given that day. I am also certain that there were other days I did not get my pills. On the afternoon of 16th June, I told a nurse I hadn’t had my medication. She looked at my chart, saw that it had been initialled, and dismissed my allegation with no further investigation. The ward sister was told, seemed unconcerned, and did nothing. When the night nurse came on shift, I also told him I hadn’t received my medication, and fortunately he believed me. He opened the medication box and found that my blood pressure medication pill packet was empty. This begs the question, how many doses did I miss? Why did the morning nurse sign that I had my medication when I didn’t? Why didn’t the person who used the last pill arrange for more to be sent from the pharmacy? Why didn’t the afternoon nurse and ward manager investigate my allegation immediately? If they dismissed my allegation because they thought I was having memory problems (which I wasn’t), why didn’t they do something to prove to me that I was wrong (which, as it turns out, I wasn’t)? Without those tablets, I was at serious risk of a relapse. I am thoroughly disgusted that whilst I was at a vulnerable point in my recovery, the hospital’s medication management procedures allowed me to go for days without essential medication. This is serious medical negligence and I will expect to be informed of the disciplinary proceedings that surely will arise from this matter.

4. Lack of care/attention to special patient needs

I have a serious needle phobia which I made everyone aware of. When I’ve had hospital treatment for other conditions (including an operation needing anaesthetic), they were very accommodating as far as helping with alternatives to injections (i.e. using gas to put me to sleep before any IV was started). It was written in my chart that I am terrified of needles and should be approached with care. Until I was well enough to protest, I was given heparin injections in my stomach. I was told this was very important to prevent blood clots, but when I said I didn’t want injections this was taken as though I’d said I didn’t want treatment. I was willing to take alternative treatments, but as discussed below, my doctor was never available to ask about possible alternatives.

5. Lack of communication and attention by the doctor in charge of my case

After leaving ICU on 07/06/2010, I only saw my doctor once. The other patients on my ward saw their doctors on a daily basis and were told what was happening with their care. On the one occasion a doctor did see me, I still wasn’t told what was happening. After social services assessed me as fit to go home, I had to wait for 3 days to be discharged, ultimately by a different doctor because mine was never available. When I complained about this after my discharge, my doctor who we (me and my mum) had never seen admitted he hadn’t even realised I was still in hospital; he said he thought I’d self-discharged. Then he stated he had been ‘following’ my case, but had no answer when I asked how that was possible when he didn’t even know where I was. Basically, for three days I was taking up a bed that someone else could have used because my doctor didn’t know where I was and the ward staff didn’t seem to be able to communicate this to him, despite the fact that he was in the same building. I had been left in the ward to hopefully get better.

6. Lack of respect for patients and their visitors

Visiting hours on my ward were restricted to 2.5 hours per day, and that time is very precious for patients and their visitors. On one occasion whilst my mother was visiting, a nurse interrupted us and insisted that I put on a nebuliser mask. The nebuliser mask makes it impossible to speak to your loved ones, and there was no particular reason it had to be done at that exact time. It was very rude, and for the sake of an hour this nurse could have waited until visiting hours were over.

Additionally, I felt ignored most of the time I spent on the ward. The nurses were friendly to the other patients and addressed all of them by name, but for some reason I was left out. Perhaps it was the fact that no one seemed to know why I was there or what was supposed to be happening with my care due to my doctor forgetting about me. I was quite surprised when I was told by one nurse that she didn’t even know what had happened to me. I thought that was essential bit of information when a nurse is going to be caring for a patient.

In summary, the time I spent at the hospital was very disappointing for me and my family. The overall lack of communication meant I stayed in hospital much longer than I should have and that caused a lot of distress. With all the people that were supposedly contacting the doctor on my behalf (PALS, the ward manager, nursing staff), I do not understand how my doctor could ‘forget’ his patient is languishing on a ward. I have huge concerns over how medications are managed and I am appalled that when I brought the matter of my missing medication to the nurse’s and ward manager’s attention, I was not taken seriously. For a more non-communicative patient, mistakes like that could be a matter of life or death. I certainly feel safer out of that ward where I know that my medication is my responsibility and I do not have to depend on negligent medical professionals to get what I need.

I do expect a thorough investigation of these issues, particularly with regard to the missing medication and my doctor’s neglect of my case. I look forward to hearing what steps you will be taking to ensure my experiences are not repeated with other patients.

Sicko – the Universial Heath care question

Micheal moore in a waiting room

So I just returned from watching Sicko in a Canadian Cinema (don't you know).

The experience was quite different. Although watching from the outside looking in on this massive problem the united states has with its self was the same, you certainly got the feeling that Canadians were shocked at how bad the problem really was.

Spoilers ahead

Micheal Moore this time around does a fantastic job not getting too muddled in the politics and conspiracy areas. Instead uses peoples stories to tell how bad things have got. Even if the stories stretch the truth, they were powerful enough to cast a couple of tears from peoples eyes. Micheal looks at the Canadian, British, French systems, but what really hammer the point home is the visit to Cuba with some 911 helpers. Micheal Moore is a genius for that one which looked to be a stunt too far turned into something very meaningful. The Cheque for the Anti Micheal Moore site owner was clever but could been seen as another stunt or a act of humanity. I thought humanity but I could see how others would think the opposite.

The movie is well worth watching even if you can't stand Micheal Moore. I went to the cinema because I want to support Micheal Moore's efforts in this one but you can also get the film online if you don't like the guy.

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