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INSIDE HEALTH – Brain training and dementia; Cluster headaches; Cancer rehab; #hellomynameis

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Programme 4.

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TX:Ìý 26.07.16Ìý 2100-2130

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PRESENTER:Ìý MARK PORTER

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PRODUCER:Ìý FIONA HILL

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Porter

Coming up today:Ìý The world’s worst headache - we visit the UK’s first one-stop clinic for people with the dreaded cluster headache.

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Clip

The only thing you could really compare it to is if you get your thumb on your right hand and you shove it behind your eye as hard as you possibly can.Ìý People liken it to like a hot poker being rammed right in your eye.Ìý Sometimes you just physically have to bash your head against the wall to get rid of them.Ìý Not very helpful but yeah they are horrific.

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Porter

And we explore rehabilitation therapy for people who’ve had cancer.

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Clip

It helped me to take my own recovery in hand.Ìý You’ve got to bring a bit to the party yourself when you’re recovering from cancer.Ìý The doctors have done the major part of their bit with their chemicals and the radiotherapy and the surgery, you have to meet them half way with your recovery – or more than halfway probably.

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Porter

Rehab is already a well-established way of improving quality of life for people with heart and lung disease, so why isn’t it being used more in cancer?

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But first dementia, and new research suggesting that brain training could reduce the number of people affected by dementia. The concept isn’t new, but the scale of the benefit has taken many by surprise.

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The 10 year study involved just over two and half thousand volunteers, divided into four different groups:Ìý One had 10 weeks of memory training; another was taught reasoning strategies; another given computer based training for processing speed and the last – the control group - offered nothing.

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The results revealed no difference between the control group and those given memory and reasoning training. But a big difference from the computer based brain training group who researchers claim were a third less likely to have cognitive decline or dementia.

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The study has not been published yet, but was presented over the weekend at the Alzheimer’s Association International Conference in Toronto. And Dr Doug Brown - Director of R&D at the UK’s Alzheimer’s Society - is there. Doug, an exciting finding?

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Brown

It is potentially exciting but as you say it’s preliminary data so we’ve not yet seen the data in full to be able to interrogate it.Ìý But it does show promise of scientifically developed brain training approaches that could potentially reduce our risk of developing dementia in the future.

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Porter

Do we know anything about these volunteers?Ìý I mean did some of them already have existing problems or not?

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Brown

There were nearly 3,000 volunteers based in the US across six different cities and they were followed up over a 10 year period, so it was a really long term study.Ìý The average age was 73 years, so it was at that point in their life where cognitive decline and dementia may be developing, so it was a really good population to be doing this research in because it can potentially be giving us an answer as to whether brain training does reduce the cognitive decline that we see as we grow older and could potentially prevent dementia from developing in the first place.

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Porter

There were two striking things for me.Ìý First of all they talked about just a 10 week training programme, then also this dramatic difference – a reduction of 33%, that’s a third.Ìý First of all, am I right in saying that these people just had 10 weeks training?

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Brown

They did, they had 10 weeks training of doing these tests two times per week during that 10 week.Ìý There were refresher training courses during the 10 year period but these tests were focusing on different parts of the brains and what they found was that the third reduction in cognitive decline and in dementia was only relevant for those that had their processing function targeted.Ìý So an important point to know, even though this is preliminary data, if this finding is true this can’t be generalised to all brain training activities that are out there, they are specific tests that are targeting particular parts of the brain that are having the effect that was presented two days ago at the conference.

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Porter

And what sort of tests were they doing on people to assess whether there’d been any change in their cognitive state?

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Brown

Well what they did is they followed these people up over a 10 year period.Ìý So every year for the first five years and every two years after that they did tests on the 3,000 people measuring both their cognitive function – so the activity or the function of the brain – but also looking at how well they’re doing activities in daily life, which is a really good way of seeing how this is really impacting on the lives of people in the study.Ìý What they found, the third reduction, was a reduction in the cognitive decline but across all groups people were able to do their activities in their regular daily life around domestic, financial, social issues, able to do those better if they’d undergone some of the brain training in the study.

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Porter

A 33% reduction sounds a lot but what happened to the control group, was this a group who showed significant decline and therefore we’re seeing a third of quite a lot or was it a third of not very much?

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Brown

Well this is the data that we really need to get under the skin of, so these are preliminary findings that have been presented at the conference, so we really have to understand what the control group is, who we are comparing this to, to see how real this one third reduction is.Ìý But we are excited – cautious but are excited but it does suggest that there is this growing body of evidence that brain training could have an effect at reducing our risk of developing dementia.Ìý And the prize is huge – if we’re able to delay the onset of dementia by five years we can cut the number of people with dementia in half.

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Porter

Doug Brown, we’ll leave you to get back to the conference, thank you very much.

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Well listening to that in our Glasgow studio is Dr Margaret McCartney – Margaret, are you as impressed?

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McCartney

Mark, nothing would give me greater pleasure than to come on and say this is fantastic and wonderful and we’ve got something really wonderful here, let’s aim to do this for all older people, what a great cure.Ìý And of course I’m not going to do that, I’m going to come along with a big swimming pool full of cold water and say look we really have to slow down here, the full results have not been published, we do not know the full data, this is not enough to be going on, I don’t think I’d be putting out any party banners yet.Ìý And let me tell you why.Ìý There’s been a long history in medicine of people presenting stuff at conferences with abstracts that are later on found to have lots and lots of holes in it, and this is why you then have peer review to try and draw out the science, look at the uncertainties and look at where we are.Ìý Furthermore this particular trial was called the ACTIVE trial, a 10 year long trial, and we actually already have quite a lot of data from this trial that has been published in full and peer reviewed.Ìý So we can go back to 2014, when a part of this big trial was published already, and this actually wasn’t a trial that was ever designed to look for whether or not this brain training could reduce dementia or not, it was designed to look at whether it could improve cognitive ability, so thinking, intellectual abilities.Ìý So all the add on stuff for dementia look as though it’s been secondary analysis that’s been added on afterwards.Ìý Apparently the same data, 10 years’ worth of data, that’s being presented at this conference said:Ìý Our study showed weak to absent effects of cognitive training on performance based measures of daily function.Ìý And it just doesn’t add up to me how the same data, looking this time for dementia, can find that there’s less dementia incidents in people who did brain training, it’s the same group of patients.Ìý So what’s going on?Ìý You really have to look under the bonnet and try and find out why the results seem to be different.

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Porter

So at the very least you would advise caution?

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McCartney

I would advise caution because we just don’t have the full details.Ìý Now in the control group the dementia incidence was apparently 14% - this is the partially published abstract of the data that’s been published with the conference, it’s less than a page, it’s just a big long paragraph really.Ìý And all it tells us is that the group of patients in the control group dementia incidence was 14% but it was 12% in people who’d completed the brain training.Ìý Now that’s a 2% difference.Ìý Now you’ll find the websites of the companies that are making these cognitive treatments are not really giving you those – this kind of numbers.Ìý Putting it in perspective they’re giving you the headline figures, we’re seeing really big reductions.Ìý But you have to know well why is that, how is a diagnosis made, what are the uncertainties, how sure are we that these smaller and smaller subgroups are truly representative of what was going on, why does the other published data, the fully published data, not tie up with this?Ìý It just seems a bit strange to me.

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Porter

Thank you Margaret and we await the full published paper with interest.

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St Thomas’ Hospital in London has just launched the UK’s first one-stop multi-disciplinary clinic for headaches. It is designed to offer rapid access to specialist care for people whose own doctors are struggling to control their symptoms. And sometimes those symptoms can be very disabling - particularly in cluster headache which affects more than 100,000 people across the country.Ìý Consultant neurologist Dr Giorgio Lambru heads up the clinic, and we went to St Thomas’ to meet one of his patients.

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James

Hi, my name is James, I come from Norwich, I have a high pressure sales job and yeah I’ve come down to see Dr Lambru to help me get rid of my cluster headaches.

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Lambru

So can you describe to us what the first feeling was?

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James

It’s difficult to explain.Ìý It feels like kind of a tingly sensation, I feel I need a drink of water.Ìý It’s almost like a burning beforehand, right about here, behind my right eye socket.Ìý And then once it kicks off obviously I can’t really control anything, I’m usually bashing my head about and trying to pinch as hard as I can here.

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Lambru

And you experience also some facial symptoms right?

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James

Yeah, yeah I usually get like a little droopy eyelid, just drops down a bit there, and usually this side of my nose is really congested.

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Porter

Giorgio, what’s happening in cluster headache?

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Lambru

Cluster headache is a devastating condition.Ìý These are headache disorders whereby patients, usually males, experience a one sided headache that normally lasts between a few minutes, up to three hours and it happens several times a day, during what we call the cluster headache bout, which is normally a period lasting between four to six weeks.Ìý That happens following some seasonal pattern, so patients with episodic cluster headache, as we call it, tend to have periods of daily multiple cluster headache attacks that normally occurs at specific times of the year, normally the change in season, whereby they experience a one-sided headache, this terrible pain normally centred around the eye and is associated with these facial symptoms.

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Porter

And the name cluster presumably comes from the fact that you get days of it one after the other, they’re all clustered together.

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Lambru

Yeah, so you can have between one episode every two days, up to eight cluster attacks a day, every day, during the bout.Ìý And then everything stops, dramatically people become completely headache and pain free and that is what normally delays the diagnosis because when they go to primary care doctors they’re given some painkillers, then the pain goes away spontaneously and people think that they’ve cured them but then the following year everything happens again.

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Porter

Well if it’s happening the next year at the same time of year I mean what do we think is triggering these…?

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Lambru

Yeah, we think that the mechanism – the pathophysiological mechanism underlying cluster headache lie into a structure that is the so-called body clock, pacemaker of the body, which is the posterior hypothalamus, which is a very tiny area in the middle of the brain that for some reason gets abnormally activated.Ìý And it seems to be responsible for the seasonal pattern of these attacks.

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Porter

Is there any link with migraine, which people will be far more familiar with, because there you get a headache and you can get some other odd symptoms that accompany that?

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Lambru

The people with cluster headache tend to – about 30% of them – tend to also have migraine or migraine.Ìý In terms of gender migraine is more prevalent in female rather than male.Ìý So normally what happens is that females with cluster headache are always or quite often misdiagnosed as having migraine instead of cluster headache.Ìý Certainly the activation of the nerves that provide the pain through the face that is in common with migraine and there is a proportion of cluster headache patients that can experience the so-called migrainous symptoms like nausea, light sensitivity, noise sensitivities.Ìý But in cluster headache all these symptoms, especially the photophobia as we call it and the [indistinct word] are lateralised or strictly on one side and that can sort of discriminate between the two conditions as well.

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Porter

Giorgio, I was going to ask you how bad these headaches are but perhaps we’ll give the first word to James to hear how his are.

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James

The only thing you can really compare it to is if you get your thumb on your right hand and you shove it up behind your eye as hard as you possibly can, people liken it to like a hot poker being rammed right in your eye.Ìý If I get them and I can’t get rid of them they can really do me some damage, not just to my mental wellbeing but obviously sometimes you just physically have to bash your head against the wall to get rid of them.Ìý Not very helpful but yeah they are horrific.

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Porter

Giorgio, the pain can be bad, he’s not exaggerating is he?

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Lambru

No, no, it’s a very dreadful type of pain, plus the headache is also called a suicidal headache.Ìý Women consider it more painful than giving birth.Ìý And the studies that have been carried out have all shown that it’s one of the most dreadful pain conditions.Ìý So I think the description is pretty consistent with other patients.

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Porter

What’s the natural history of the condition, I mean when do people start to get them and what happens to them if they’re left to their own devices – do they go away again?

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Lambru

Cluster headache normally starts at the age of 30 – early 30s – so slightly later than migraines.Ìý And the vast majority of patients have the so-called episodic pattern with bouts of attacks, alternating with remission periods.Ìý And then there is a 10-20% of them that actually happen to suffer with the chronic form with attacks that occurs relentlessly without any remission.Ìý These of course are the most disabled patients.Ìý The vast majority of people with episodic cluster headache continues to have episodic cluster headache.Ìý There is a proportion of about 20% that goes into prolonged remission for years and then the pain comes back again.Ìý When it comes to the patient with chronic cluster headache the vast majority of them I would say continue to have chronic cluster headache.Ìý But there is a small proportion, possibly due to treatment, that actually goes back into the episodic pattern.

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Porter

What can you offer people like James in form of relief?

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Lambru

The management of cluster headache involves certainly abortive treatment, so a treatment that can stop the pain as soon as possible because unlike migraine I would say in cluster headache you cannot wait, you have to offer something that works within five to 10 minutes, and sumatriptan injections certainly do as well as high flow oxygen.Ìý And then for those with prolonged bouts of attacks or with the chronic form there are some preventive pharmacological approaches.Ìý Verapamil is one of them, which is one of the few medications with randomise control evidence.Ìý And Verapamil is a medication that is used in cardiology but in cluster headache seems to be quite effective, especially at high doses.Ìý And there has been some hypothesis that the Verapamil can modulate the calcium channels in the hypothalamus.

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Porter

So it’s effecting the brain chemistry in some way we think.

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Lambru

We think.

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Porter

So what’s the classic mistake that’s made out in the community before people come and see a specialist like you, is it that it’s confused with migraine?

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Lambru

Yes, so it’s confused quite often with migraine, other people confuse it with a sinus problem because the pain can actually radiate to the face, maxillary sinuses, you have the runny nose and runny eyes, so why not sinusitis.Ìý And other people see dental specialists or maxillofacial surgeons because the pain can radiate to the teeth and the gums, they got all sorts of dental treatment with no effect.

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Porter

What was the idea behind the one-stop shop, what was the need that it was meeting that wasn’t there already through a conventional headache clinic?

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Lambru

The main need from patients is when they get into a bout, we don’t think that they can wait that long, so we would like to offer them a very quick appointment where we can confirm the diagnosis, give them a treatment as and when and then to offer other possible treatments on the day of the assessment.

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Porter

Yeah that must be fantastic for patients like James because I mean a week, a two week, a six weeks, a six months wait, which can be quite common in these sorts of clinics, is terrible for somebody who’s suffering that much.

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Lambru

And you can imagine if you have a bout that lasts six to eight weeks with six attacks a day and you’re seen six months after when you’re pain free it is completely pointless.

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Porter

Dr Giorgio Lambru and his rapid access cluster headache clinic, which can only be accessed by referral from a GP, or another specialist. And I suspect it might be busier after this programme. More details on the Inside Health page of the Radio 4 website.

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Rehabilitation therapy is well established in the NHS as a way to improve quality of life in conditions like lung disease, and for the 900,000 or so people in the UK who have survived a heart attack. So, 20 years after cardiac rehabilitation became a standard part of therapy for heart attacks, why isn’t it routinely available for people recovering from cancer - despite decade old guidance from NICE suggesting it should be?

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Good question. And one that a pilot study by a team from Warwick hopes to address. Peter is a participant in the trial.

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Peter

I’m nearly 70 now and two years ago, having bowel problems, I went to the doctor who immediately referred me to a consultant.Ìý A tumour was found in my bowel and I went on to a course then of radiotherapy and chemotherapy to shrink the tumour and had an operation and a colostomy, unfortunately, permanent colostomy.Ìý That all finished about a year ago.

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Porter

The cancer rehab pilot that Peter took part in was led by Annie Young, Professor of Nursing at Warwick Medical School.

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Young

After chemotherapy and during chemotherapy and radiotherapy and surgery, the mainstays of treatment for cancer, patients are often extremely tired.Ìý So not the acute effects of chemotherapy, like nausea and vomiting, but the fatigue builds up.Ìý There could be many worries that they have as well, so that may affect their sleep.Ìý Because of some of the drugs they’ve been having they may be putting on a bit of weight.Ìý And once they’ve finished their treatment the patients they may be wanting to get back to work and it’s how to and when to get back to work and how to enter into the workplace again.Ìý So you can see that there are many and varied concerns of patients during and after treatment for cancer.

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Porter

I suppose to put it simply the treatment that they’ve had and the illness itself often knocks them for six and it takes them a while to recover both physically and mentally.

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Young

Exactly.Ìý So they have been having treatment often for six or more months and nowadays with many of the new treatments, the new drugs, that they’re having they could be having treatment for years and that just builds up really and they’re very tired.

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Porter

Is there any national guidance at the moment outlining what somebody with cancer should be having in terms of rehabilitation?

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Young

Yes, so Macmillan have very good guidance on what they should be having and that nurses in particular, cancer nurses, should be doing assessments all the way through to see what the patient’s needs are to see what they want and especially advice on rehabilitation then.

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Porter

That’s what they should be having but is that actually happening in every unit?

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Young

No definitely not.Ìý There are very, very, very good hospitals and this is acute care we’re talking about and many of the nurses are assessing psychological care, physical care, social care and spiritual care.Ìý This happens just on a very ad hoc basis, even within our hospitals – some clinical nurse specialists do it for their patients, others don’t.

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Porter

Annie, what about the evidence – do we have any evidence that rehabilitation actually improves outcomes for patients with cancer?

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Young

If we go back 10 or 15 years we have great evidence for people who have had heart attacks and cardiac rehabilitation kind of trips off the tongue.Ìý So our study follows the very same design as cardiac.

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Porter

You obviously don’t want to talk too much about your results until they’re fully published but in terms of looking at the pilot I mean what have you learnt from that, what’s worked and what hasn’t?

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Young

We’re looking at usual care versus home based care, where facilitators – these are rehabilitation facilitators – go to the patient’s home and help them with support – exercise, healthy eating, all the usual stuff.Ìý And then we also have a third arm which is a group based therapy.Ìý Now the rehab for heart attack model found that both home based and group based were as good as each other and better than usual care.Ìý So we’re looking to find out and we’re interviewing the patients and interviewing the facilitators and we’re also measuring many variables and including wellbeing and quality of life.

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Peter

There were two sessions a week – two three hour sessions a week.Ìý And the Monday session was always about that week’s subject, which would be alcohol, smoking, fatigue, stress, whatever and we were all invited to talk about it and our particular problems and how we might deal with them.Ìý And it helped you put things in focus, helped you share your problems with others if you had them and for me it helped me to get my fitness and to get the fitness advice that I needed, also relaxation advice and to deal with other things like stress fatigue and so forth.Ìý It helped me take my own recovery in hand.Ìý You’ve got to bring a bit to the party yourself when you’re recovering from cancer, the doctors have done the major part of their bit with their chemicals and the radiotherapy and the surgery, you have to meet them halfway with your recovery or more than halfway probably.

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Porter

Annie, Peter obviously appreciated the rehabilitation therapy, it seems like it’s given him a lot of support and helped him focus his own efforts.Ìý How has it been received across the board?

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Young

From interviewing our patients we have found out that the patients are really, really happy with this intervention, either the group based therapy or the home based therapy.Ìý They really get something out of the group.Ìý Now those that are based at home really become attached to their facilitators as well and the facilitators are saying that they feel they’ve made a real difference.Ìý And the intervention, interestingly, has been at the right time because there is a huge unmet need there.

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Porter

Do patients who’ve been through treatment for cancer feel somehow fragile, are they overly cautious about life after the cancer?

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Young

Well I think we molly coddle them, they get huge intensive attention throughout their treatment.Ìý They have clinical nurse specialists looking after them, they have a whole multidisciplinary team looking after them and then I do know that they feel vulnerable and they have many unmet needs after the treatment is finished and they’re out into the big wide world.Ìý So that’s a key point in care to start some rehabilitation.

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Porter

So let’s see how Peter did.

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Peter

I do still go to the gym now.Ìý I’ve tried to make it twice a week regularly and I do bike training and use the cross trainer.Ìý I want to keep as fit as I can and stay out of hospital.Ìý That’s the best thing you can do for the hospital is to keep away as much as you can.

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Porter

Here, here.Ìý Obviously Annie, Peter’s a great ambassador for your work but how realistic do you think it is that everyone who’s been through cancer can get this sort of intensive support given the cost and given the squeeze on resources?

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Young

I think if we use the facilities that are available – the counselling facilities and the gyms, the cardiac rehabilitation centres, the cancer rehabilitation centres in some hospitals that we have – so if we use the facilities available I think the commissioners will buy into that model instead of setting up a completely new programme.

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Porter

The aim would be to integrate it with existing services?

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Young

I think so, I think that’s the only way we’re going to do this.Ìý Now this is a very patient centred programme and also to instil that self-management that you hear Peter had, as well, he was incentivised after the rehab to carry on and do it himself and to do what he wanted to do.Ìý There are many patients in wheelchairs doing exercise, so it’s not all about running on a treadmill.

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Porter

Professor Annie Young. And the full results of her pilot should be published in November, with the trial proper starting soon after that.

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You don’t need me to remind you that not everyone survives their cancer. We all know people who haven’t. Each individual will be remembered in their own way by those that knew them. But few have the impact that this young doctor did. Her simple message has improved the experience of millions of people depending on the NHS.

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Clip – Kate Granger

#hellomynameis – is a social media campaign that I launched after my experiences as a patient in hospital and I noticed during that time that many staff forgot to introduce themselves to me when they were delivering my care or interacting with me.

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Porter

Dr Kate Granger, who died at the weekend from cancer at the age of 34, talking about her #hellomynameis campaign. ÌýMargaret McCartney, it was a message that struck a chord.

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McCartney

Oh hugely, I can’t think of many people really on social media who I would always look forward to reading from and about and I got to know Kate a little bit in 2012 when she’d published a book called The Other Side about her experiences of being doctor and being treated for cancer.Ìý And at the time I was researching a book about dying and I really wanted Kate’s opinion and expertise on what I was doing and she was just so wonderful, really kind perceptive.Ìý And she had this really simple idea, which was your experience in hospital would be made much better if you knew the name of whoever was looking after you – such a simple thing but such a clever and kind and compassionate thing as well.

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Porter

And it really has had an impact hasn’t it.Ìý I hear people say:Ìý hello my name is on a daily basis at work.

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McCartney

And when you’re busy and you’re stressed and you’ve got lots of things to do and you’re pulled in four directions at once and you’re a bit tired and you need a pee, you know, it can be very easy, as a healthcare professional, to forget that actually for that person coming in today that’s maybe a really frightening, distressing, unpleasant, scary experience that for me, as a doctor, this is routine, this is normally what I do but for someone else on the other side, as Kate would say, it is entirely different.Ìý And just that human connection is so important and I think when we forget that in healthcare we really are sunk.

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Porter

Well thanks to her Margaret I don’t think we will forget it.Ìý Perhaps we should leave the last word to Kate.

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Clip – Kate Granger

Patients are people at the end of the day and we should treat everyone that we look after like a member of our own family or how we’d want to be looked after ourselves.Ìý If we meet somebody in the street then we introduce ourselves, we give them our name, so that should happen in healthcare as well.Ìý So get your introductions and first impressions right and you’ll be half the way to getting the rest of healthcare right.

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ENDS