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Patients and patient group representatives

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00:00:10:07 (Jenny) I chair the Dorset Public Patient Involvement Forum. I think the Connecting for Health project is very interesting because of how useful it's going to be, and what a difference it will make to doctors and to patients.

00:00:23:16 (Patient focus group leader) So the Summary Care Record, as we were discussing earlier, is going to initially have three very important pieces of information on it. It will be drawn from the patient's GP record, and uploaded will be any allergies that the patient may have, their current medication, so that anybody treating them will know what medications they're taking, and also any bad reactions they've ever had to medications in the past.

00:00:52:23 (Mike) I've suffered from diabetes since 1980. I've had several problems with it at different times. Hypos are the main problem. I had a bad attack one year when I was on holiday. Fortunately my wife was with me, so she knew what was happening. But you've got to be aware, or someone with you has got to be aware of what you're suffering from, especially if you're a younger person because it can be confused with being drunk or on drugs or something like that, and the treatment then would be completely wrong.

00:01:34:20 (Adrian) I suffer with multiple sclerosis. I've suffered with it now for over 20 years. I was introduced to a new specialist who I went to see. And we spent about two hours talking about what had happened in the past. I have difficulty sometimes remembering what happened last month. So, remembering exactly what was happening 20 years ago was quite difficult. But if that was on the records, then it follows me around and everyone can see it that needs to see it.

00:02:05:08 (Mike) When you're in hospital or going for an appointment at the hospital for treatment, my records are paper records at the moment, so they have to travel round with you or be accessed, Whereas when you go to the other departments if they're on computer then the consultant or the person you're seeing can access them straight away instead of you having to hang around waiting for records to follow you around.

00:02:37:17 (Pauline) I have arthritis in various points, on my spine and particularly in one knee and ankle. I also have digestive problems that present themselves in various ways. I was at home, I virtually passed out and I was so disorientated, that I couldn't remember what was wrong with me. I couldn't remember what medications I took. Had they known what my medication was, they would have known immediately why. So, because I wasn't able to tell them for the first few minutes that I did take that medication, it would have been much better for them.

00:03:13:23 (Mike) If you're in another part of the hospital, it can take up to half an hour for the records to follow you round, and you're hanging around for that time. Spend... hour, an hour and a half for a 20-minute appointment, basically, without records.

00:03:45:20 (Peter) I work for the National Patient Safety Agency as Director of Patient Experience, but I'm talking primarily here, now as a patient. I think there's... There's many situations in the NHS, when you're looking at such a big system where you're getting bits of service from different bits of the system, and it would be much, much better if that system had the most up-to-date information at the time it needed it.

00:04:19:14 (Mike) With shared information, um, it's on the computers in every department, and as long as they've got your information then it can be accessed straight away instead of waiting for records to follow you around.

00:04:37:09 (indistinct)

00:04:40:04 (Tari) I'm asthmatic. That's about ten years ago I had the first symptom of asthma. It would be useful if they had in my conditions, you know, why I had attack or infection, because if they had the records beforehand they can tell me or my relative, even the consultant who's treating me, he can know what kind of condition I had before, and what kind of medicine I should have now.

00:05:11:14 (Jenny) Accessing records will be very useful for some people. Some people are really concerned to know that their condition is noted, that the drugs they have prescribed are noted, and that their allergies are noted. And I think there are people who are really concerned about things like that, and for them to be able to have a look at those records and make sure they're absolutely accurate is very important indeed and will reassure them a lot.

00:05:34:02 (Nurse) OK then. Thank you.

00:05:35:20 (Mike) Accessing your own information I think is a good idea because... you might get your medication changed when you're at the hospital or at the doctors. If it's done on a link, then it's updated virtually straight away and you can see whether it has been updated yourself.

00:05:59:18 (Adrian) You actually know what's on your record because you can actually then choose what you want to be shown. So you actually have some control over it. As a patient I suppose I have very little. Every time I go and see my specialist another piece of paper is put in there... and I've flipped through my records and it doesn't make any sense at all. It's never in any order of any kind, and just... but just knowing what everybody else knows is quite...gives me a lot of confidence.

00:06:26:01 (Tari) Yeah, another thing obviously it would be better for me also to knowing what type condition or what kind of…you know, records GP had mine so I can read that also that's also an advantage for me. So if it's, what friend said, is already there, if you don't want to disclose some kind of illness, maybe another good idea to have in these kind of records.

00:06:53:22 (Adrian) But it's strange enough, I've talked to a few people about this and they've all though that this system was already up and running and had been for about 20 years.

00:07:01:01 (Pauline) Well that's because some GPs have...IT systems I think, isn't it. (Adrian) Mmm. Exactly, exactly.

00:07:05:07 (Pauline) But it's not necessarily a linked system, is it?

00:07:08:21 (Adrian) No, no. They don't quite understand the extent that we're talking about now.

00:07:13:23 (Peter) We, the patients, should have access to our information always. You know, it's my body and my information, and the idea of having someone protecting me from knowing that something bad has happened is absolutely crazy. I think this is one of those things where patient access to their own information... When we've made the change, when patients do have free access at any time, day or night, to their own information, and they see exactly what service deliverers see, people will say, "What, you never had that before?"

00:07:50:09 (Jenny) I think that for professionals to be able to share and access records is vital because there may be things about people's allergies, for example, allergies to penicillin or things like that, which are really, really important. And once again they don't have to wait to get that information from somewhere else, and they don't have to do tests, ao somebody is really... And it'll speed things up enormously and I think it'll save time and money as well.

00:08:12:03 (Peter) Well the electronic prescription service has fundamentally changed my life for the better. A lot of these initiatives are about the mundane boring things, and it's not the hot sexy things that change people's lives. I'm a paraplegic, that means I'm paralysed from my chest below, that means I'm doubly incontinent, that means I use all sorts of kit and equipment. Before, I'd have to ring up my GP, or send a letter often, ask for a repeat prescription, wait 48 hours. Then go back, pick up the prescription, if it's ready, drop it into the chemist, wait a few days. Often the chemist wouldn't have all the bits, so then you're constantly checking it. And actually managing that process was quite an important aspect of my life, and that's vanished, it's gone.

00:09:08:13 (Adrian) Information about me, my information, even though it's used by lots of people, for me to have the ownership of it, I think is extremely important.

00:09:19:16 (Tari) The NHS give us more information about it, more education about it. The fear the people might have a little bit, will go. I think people will probably accept it quite easily.

00:09:35:21 (Jenny) I don't think people should be concerned about the security of digital records, because as I understand it, the security is of the highest level, much higher than the acceptable levels for people who have online bank accounts, or buy things online, for example. So perhaps people are making assumptions and jumping to conclusions, when in actuality it will work and it'll be very safe, and of course it'll be so useful for when people are ill.

00:10:03:06 (Peter) I think it's a great thing to share information. And when I say share, not just between the service deliverers, we need to see the information as well. And if I think it's a good thing and I know my wife and kids think it's a good thing, then I'm sure other people will, too.

00:10:17:23 (Jenny) I think the future of healthcare for the patient is very exciting. It does concern me that patients actually don't know what's going on, and they are still responding to things that happened some time ago, and in the meantime all sorts of things are happening, all sorts of exciting things, things that will make their health care better, which will make their health care safer, and which will make their health care quicker. And I think it's a shame if people don't realise that and I think it's an exciting future.

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