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Patients and professionals

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00:00:19:20 (Jon Orrell) My name's Jon Orrell. I'm a GP here at Weymouth in Dorset. I think the Summary Care Record service will really help patient care, making it quicker, better and safer. And how it would do that is if a patient's knocked down and brought into a casualty unit the doctor there in the A&E will have access to their past histories, drugs, allergies and immunisations, which will make it much easier to look after them and give them the right treatment.

00:00:43:13 (Julie Clifton) My name's Julie Clifton and I work for NHS Connecting for Health. I've worked here since the beginning in 2003, and this year I've been seeing NHS IT in a different way because I've been using NHS services as a patient. I was diagnosed with breast cancer in 2006 and I suppose I was expecting to see more of the kind of systems that we've been introducing used during my treatment, and more information about me flowing between the organisations that were involved in looking after me.

00:01:16:20 (Jon Orrell) When we tested out the idea with patients of sharing records, most of them were quite amazed we weren't doing it already. They thought we're one NHS service, why aren't you sharing this with the hospitals, why aren't you sharing it with the ambulances?

00:01:27:06 (Julie Clifton) I've got a really common illness. I think it's 45,000 women a year get the kind of same illness that I've had. So I think I was in a very common treatment pathway, but the treatment I had was from three trusts, five actual individual hospital sites as well as the GP. And even in the same trust, the information wasn't always shared. So there were lots of times when I would have benefited from having information about me being shared between the different organisations that were looking after me. When you have chemotherapy you have to have blood tests all the time and your veins collapse ant it really, really hurts. but if I was in one hospital, and I'd had a blood test the day before in another hospital, they couldn't access the results, so I'd have to have another one, and that really upset me. And, knowing what I do, I knew that it should be so easy just to get a blood test result from one hospital to another, but I couldn't do it. I know that lots of other patients feel the same way as I do about wanting to share their information and wanting access to the information themselves as well.

00:02:29:24 (Brian Wootten) My name is Brian Wootten. My conditions are diabetes, and I also have angina. Diabetes can affect your feet, it can affect your eyes, it can affect your heart, and because there are so many different specialists involved in all of these areas, sharing of information, it would be extremely important to us. If someone treating me didn't know that I had diabetes there is a possibility that I could go into a diabetic coma, which could be fatal.

00:02:57:15 (Janet Bisset) My name is Janet Bisset and I've been allergic to penicillin since my second child was born, and he's more than 50 years old now. And if I should be ill and away from Bolton, where nobody knows me, I think it would be a very good idea that the doctors or nurses treating me should have that information, and didn't give me an injection of penicillin. When I did have one, in my left leg, the leg where the injection was given me, swelled from the knee to the hip, and it took quite a long while to go away. I hate to think what would happen if they'd... put an injection into a drip for me, and I'd have got it all over.

00:03:36:04 (Brian Wootten) Another problem which I have is a serious allergy to codeine. The effect of taking codeine means that I have serious stomach cramps, so for that reason it's particularly important that there is shared information about my allergy.

00:03:49:24 (John Taylor) I'm John Taylor. I had a heart attack in 1989, which meant I had five bypasses done. Eight years later I had to have four of those re-done. In between, I had blockage to my left kidney artery and that had to be replaced. So I have quite a convoluted medical history and I also take quite a lot of medication, so every time I go to hospital, I have to go through explaining to junior doctors, and nurses, and A&E, and consultants, exactly what's happened, and then someone else comes along, I have to explain it all again, and again, and again. And if it was available electronically wherever I was in the country, it would speed up the diagnosis and treatment for me.

00:04:35:17 (Jon Orrell) It may not be apparent to the outside but the NHS is broken up into very discrete tribes, which don't communicate well with each other. It's all got the NHS badge on it, but whenever patients move around between the various parts of the system, the information about the patients' drugs and allergies doesn't move across. It's been said that when someone's admitted with a problem, they get asked 18 times about their medication. This shared record service that we're looking at gets round that, cos whatever the accurate drugs and allergies will be available anywhere within the system.

00:05:04:02 (Brian Wootten) I think the introduction of shared information throughout the NHS will be of particular benefit to people like myself with diabetes, because we use both primary and secondary care due to the multiple complications of the disease.

00:05:17:18 (John Taylor) If people in the NHS who needed the information could access it immediately and not have to keep asking me or my relatives for information, then I would find this most helpful. The last thing that a patient wants is to constantly be asked the same things time and time again, every time they're moved.

00:05:40:05 (Julie Clifton) There's so much to worry about when you're ill and so much to think about, and so many different people involved in your treatment, that having to constantly be kind of telling people what's going on, and remembering the drugs that you're on, and remembering what date you had your last blood test, what date you had your last scan. It's just...you just don't need to worry about it. It would just be so much nicer if you knew that that information was there.

00:06:07:04 (John Taylor) If the health professional that I'm seeing was able to look at the information five minutes before I went in to see them, then we would have a full time consultation without having to waste time going through all these details. And quite a lot of people, and I must admit I'm one of them, can't remember the names of everything, every medication they're on each time, particularly when, like me, they're on quite a number of medications.

00:06:36:06 (Brian Wootten) Currently, I use this card to pass information about my medication to various departments within the NHS. And hopefully the introduction of shared information will mean that I no longer need to use that card, because the information which will be there held on me, will be up to date and will be held by everybody involved.

00:06:58:04 (Janet Bisset) The benefits of being able to access a summary of my own records is quite amazing.

00:07:04:04 (Brian Wootten) The opportunity to access my information at home on my computer, will be a great benefit I feel, because I will be able to check my medication and things from hospital very quickly.

00:07:15:21 (Janet Bisset) It would change the way I feel as a patient, in that I'd feel much more in control of what was going on myself.

00:07:22:06 (John Taylor) We holiday with a touring caravan, so quite often we're in the middle of nowhere and although the ambulance services would get me to the nearest A&E department if something happened, they would not have my records and my records could literally be 300 miles away. And what are they going to do? Put them in a taxi and send them down? Or the far better would be that if they were instantly available and in an electronic storage system. It's not yet happened to me, but... I have it at the back of my mind all the time, what if?

00:08:00:07 (Julie Clifton) I really do understand that people worry about the security of their information. For me, it wasn't a problem. I wanted everybody to know as much as possible so I could get the best treatment.

00:08:12:11 (John Taylor) Patients don't have to have a Summary Care Record, or they don't have to share their Summary Care Record. But I feel that this would be a mistake.

00:08:19:23 (Julie Clifton) For me the problems were much more about people not knowing than knowing. (Julie) If you're very ill you just want to get better, and you just want the best possible treatment to allow you to get better, and whoever needs to know whatever they need to know, just has to know it.

00:08:34:15 (John Taylor) When I need medical care, the last thing that's on my mind is worrying about who's going to have access or who is not going to have access. I want the people who need the access to be able to get it, and I'm not really bothered the other way. I have sufficient trust in the systems within the health service and the profession to know that it's not going to be misused. Certainly I've far more confidence in the... security of my records in the National Health Service than I have with many of the records that I know are kept on other databases.

00:09:14:21 (Jon Orrell) Choose and Book's been really popular with patients, and we've been doing it right since it started. It's a system whereby during the consultation the patient can see which hospitals they could attend and even be given a choice of consultant, and there and then identify a time and walk out of the surgery building knowing when they'll be seen and at which hospital.

00:09:33:21 (Jon in background) There's the list of the possible appointment times...

00:09:35:18 (Julie Clifton) My GP doesn't use Choose and Book, so when I went for my initial consultation with them. they said that they would refer me to the hospital, but after two weeks I hadn't actually received anything from the hospital inviting me for an appointment, so I phoned up the GP and… I don't really know what happened, but the referral kind of had got lost. So the hospital didn't know anything about me and the GP didn't have records, so... I was actually told that my condition wasn't urgent and not to worry about it. But that was just because the information had got lost.

00:10:05:15 (Brian Wootten) One of the benefits I found of Choose and Book is that recently I had a condition which was called trigger finger, which affected my hand, and when I went to the doctor he gave me the option of choosing the hospital where I could get it treated, and also I could choose my time, which meant I could have it treated very quickly.

00:10:22:23 (Julie Clifton) If my GP had used Choose and Book, then I would have left the surgery knowing the time and date of my appointment with the consultant, and that would have been really reassuring because I had two weeks of waiting for the postman to come everyday, not knowing when I was going to be seen. So it would have felt a lot better for me to have known when my appointment was going to be.

00:10:42:03 (Jenny) - Thank you very much indeed. (Jon Orrell) - No trouble at all. See you again.

00:10:44:20 (Jon Orrell) I think the Summary Care Record is an integral part to making the NHS work in the future. The whole idea and thrust of healthcare is moving things out of hospitals into the community, where there'll be whole teams, not just the GP, but community matrons, physiotherapists, emergency care practitioners, a whole group of people working from different organisations but sharing the common aim of looking after people at home or as near as home as possible, and having a shared patient record where things can be passed between the services is vital. So we're not trying to do this because it's a great idea and we like delivering IT projects. We're doing it because we want to look after people in their own homes and make their care better.

00:11:26:01 (Julie Clifton) I've always thought the programme was the right way, and I believe that better information will lead to better care. I just know more details about how now.

00:11:34:17 (Janet Bisset) I think that these new developments will make a great deal of difference to one's care, and there will be a sort of continuity, what people call "joined-up writing" sort of thing, that will be a continuity of care wherever you go. And after all, so many people do move out of their home area to live near their children, and... in the old days great big thick wodges of records would follow them, presumably, whereas nowadays all you have to do is press a mouse on the computer.

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