Reaching out

Days seem to be flashing past, and I desperately need things to slow down. I’m tired, and stressed out. I can’t seem to relax at all. I can’t switch off. And as I mentioned in my last post, I have a strong sense that this can’t last. Or more accurately, that can’t last.

At the Day Hospital (part of the psychiatric hospital) I once again found myself floundering after the morning sessions; I can only keep up the smiling for so long. I made another friend, and watched my friend from Tuesday slip towards being sectioned. That was painful. By the afternoon I was really struggling to engage with any of the activities, and when my nurse offered me a 1:1 I knew I had to accept it, even though I don’t feel hugely comfortable with him.

I laid it all out on the table – my mood is nose-diving, my stress levels are rising, I’m making silly mistakes all over the place, and ultimately I’m scared about how this might end. Despite my misgivings, this nurse came through for me. He listened, and instead of blandly reassuring me he drew up an action plan – he’s going to contact my psychiatrist, and ask the assessment (crisis) team if they can offer me any more support. He wanted me to see my GP about the whole memory/mistakes thing, and he’s going to phone me tomorrow to check how I am. I’m really grateful to him for all this, and I told him that.

Tomorrow I have my screening for the ketamine-infusion therapy trials. I did manage to tell my Mum about this over the phone, and she immediately said she didn’t want me to do it, at all. She reckons my brain chemistry is more ‘delicate’ than other people’s because of the reactions I had to quetiapine (Seroquel) /risperidone, so I shouldn’t take the higher risks of a trial-stage treatment. I do want to explore this treatment option, but I don’t want to worry her. I’m considering lying and saying I’m not having it if I decide I do want to go ahead with it. Let’s see how it goes tomorrow.

Job interview

I had my job interview today for an administrative position at one of our local hospitals. Last night I made the mistake of looking for tips on Google regarding experience of NHS interviews for this particular position…I ended up certain I wasn’t prepared enough, and was destined to fail.

This morning I looked back over the original advert, and found it reassuring. I’m not applying to be a rocket scientist, and the job description files suggested I’d be part of a really friendly team. I decided to take propranolol (80mg slow release) as a precaution, and headed out.

I think it went well! The interviews were 20 minutes long so there weren’t too many questions, and there wasn’t anything that completely stumped me (contrary to the internet predictions). I’m absolutely happy with my performance – whether or not I get the job, I don’t have any regrets. Doctors sometimes suggest that I lack confidence or self-esteem, but they have never seen me in these kinds of situations. I know what I’m good at, and if you’re thinking of offering me a job, I’ll tell you all about it.

Unfortunately the odds are against me in actually getting the job – there were a LOT of people being interviewed for just one position, but the nice thing is I’ll be told tomorrow, whichever way the decision goes.

I can’t comment on my mental health today. Let’s pretend the concept doesn’t even exist.

Medical data sharing in the UK: care.data

If you live in the UK, the chances are you’ve heard about the care.data debate. If you haven’t, this is about a change in how personal medical information is shared. As I understand it, originally GPs have been responsible for protecting information regarding their patients, in compliance with the Data Protection Act 1998. As such, personal data has been stored on secure servers protected by firewalls and passwords, and access is limited to members of the practice team, and on occasion other health care professionals (e.g. District Nurses) on a strict need-to-know basis. A limited amount of patient data is shared at local and national levels to help design health services, but this data is anonymised before it leaves the practice.

This system is being ‘revolutionised’ by care.data, a programme administered by the HSCIC (Health & Social Care Information Centre) which is extracting personal information about all patients in England to a national database. Complete records are being created for each patient in this database, containing not only their medical history, but also their date of birth, NHS number, postcode, and gender. The idea is that this database will help the NHS plan and improve services, and access to some of the contents will be sold to third parties. To be clear, care.data is not about sharing medical information between health care professionals as they will not have access to the database. If patients do not want their data to be extracted and sold on in these ways, they have to get in touch with their GP practice to formally opt out.

There are so many objections to this that it’s hard to know where to begin. Let’s start with patient consent/awareness. This programme has already received fierce criticism for inadequately informing patients of the coming changes, which has spurred the distribution of a leaflet entitled ‘Better information means better care’. It’s highly questionable that this leaflet can be considered to improve the situation, primarily because it says very little about the right to opt out, and does not contain an opt-out form, instead giving the impression that you have to make an appointment with your GP if you object to your information being shared. It might also be added that sending out leaflets is not an effective way of informing patients about such important changes to how their data is stored, because they tend to be discarded as junk mail, but that’s another matter.

By running an opt-out initiative, the HSCIC is assuming that it has the consent of all patients to collect and share personal medical information, but that’s arguably an outrageous assumption if it can be suggested that much of the country doesn’t fully understand what’s going on – and a recent BBC article says exactly that. It is undeniable that at the very least, communication regarding care.data has been confusing, and on that basis the programme should be halted until it can truthfully state that it has gained informed consent from all the patients within its database.

The next issue worth looking at is that of anonymity. The HSCIC states that patient privacy will be protected because names will not be stored, but as stated above the personal information to be extracted includes NHS number, date of birth, postcode and gender. Cross reference this information with something like the electoral roll, and BAM, say goodbye to anonymity. Remember that private organisations will be able to pay for access to data from care.data. It is claimed such data will be ‘pseudonymised’ when it is passed on in this way, but this will be outside your control. Given that withholding your name, but including your NHS number and date of birth is considered to be ‘protecting your privacy’, this worries me greatly. For further insight on how ‘anonymous’ data in care.data could be used to identify patients by third parties, check out this site: care-data.info

So, what is to be done? Well, nothing if you’re happy with your personal information being shared. If on the other hand you’re concerned, you need to get in touch with your GP practice and opt out.

This is hitting the news again today because a GP, Dr Gordon Gancz, has bravely decided to automatically opt-out all of his patients, requiring them to get in touch and opt-in if they do want their information to be extracted by care.data. He contacted all of his patients to make them aware of his decision, and gave them clear instructions and ample opportunity to opt-out. As a result he has been threatened by the NHS and fears losing his job. Apparently this is what happens if you stand up for informed consent, and it is ridiculous.

If you live in the UK, I urge you to take charge of your information by reading up about care.data, and then make your own decision about whether or not you want your details shared in this national database. Don’t let the HSCIC make the decision for you.