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Interview: Jackie Ashley

When husband TV presenter and journalist Andrew Marr unexpectedly suffered a stroke, Guardian columnist and BBC radio broadcaster, Jackie Ashley, found herself thrown into the role of full-time carer

 

Guardian columnist and BBC radio broadcaster Jackie Ashley suddenly found herself thrown into the role of full-time carer after husband TV presenter and journalist Andrew Marr unexpectedly suffered a stroke to the shock of all those around him January of last year.

“I couldn't believe it was happening. He'd actually fallen out of bed, and he said fairly quickly that he thought he was having a stroke. And just taking one look at his face, it was fairly obvious,” said Jackie.

Despite being initially conscious, after suffering a “third bleed” in hospital, Jackie said that there were about three days when Andrew drifted in and out of consciousness. He spent two weeks at the hyperacute unit at Charing Cross Hospital and then another six weeks in the acute, which according to Jackie is longer than is customary:

“The stroke was about it was as serious it could have been. We were told at one point that he may not pull through…”

 “We have three children one of who was doing A-level levels, another was doing first year exams at Oxford [University] and my other son was working so he had to take lots of time off work. We were literally at the hospital, day and night [for the first two weeks], and then after that, all day. We took it in turns to visit and sit with him and not really knowing what would come back really if anything, and indeed what state he would be in. So that was a very stressful and traumatic time.”

Currently, the Royal College of General Practitioners (RCGP) estimates that 12% of adults in the UK population are carers, with the number increasing each day as long-term conditions rise steadily.

Termed a 'hidden army' by the RCGP, all too often, carers do not feel adequately supported. Suddenly thrown into the role of a full-time carer Jackie said that there is not enough information available to support carers in the transition from looking after the patient at hospital, where there is a lot of support, to caring for them at home:

“Certainly at first, a lot more advice on how you achieve the basics of life [would be useful], be it getting showered, getting dressed, getting from place to place. All those little things you eventually work out a way, but at first, you are completely at sea. You suddenly come home and you realise there's this person who can't move his left arm and left leg very well and how are you going to manage? And there's very little information given as to what you should be doing.”

Furthermore, day-to-day help was not provided, and although Jackie got a carer privately for the first four weeks as she had been on crutches at the time having broken her ankle a couple of months before, that quickly stopped as among other things Jackie said that it meant Andrew had to get up at the same time every day, which was not always practical.

“Carers need to be slightly looked after themselves as well. I'm lucky, I've got supportive family, but I think for someone say an older woman with only her husband she's looking after and no other family, I think that would be extremely difficult to manage because you do become completely exhausted by it.”    

To increase the support provided to carers, the RCGP was awarded more than £380,000 in March from the Department of Health (DH) to develop an online information 'hub'.

The hub which aims to help GPs improve the support and services they provide for carers will have information about their needs, from the initial diagnosis through to the end of the condition or even end-of-life, with a focus on depression. It will also offer guidance about what questions to ask carers, what rights they have and what support is available. The aim is to link a range of supplementary resources on disease specific conditions including dementia, end-of-life care, and mental health.

A DH funded tool has also been developed by the Queen's Nursing Institute, which helps community nurses to support carers more fully. It is a free resource helping nurses to make an assessment of carers as well as signpost them to relevant resources.

 Since Andrew's stroke, Jackie has been an advocate for support for better rehabilitation for stroke survivors and for carers' rights.
 As well as the need for more support for carers, Jackie felt that there was a distinct lack of continuity for the patient in the transition from being at hospital to going home despite strokes being so common.

Every year, more than 150,000 people in the UK have a stroke, and it is the third largest cause of death after heart disease and cancer. The brain damage caused by strokes means that they are the largest cause of adult disability in the UK.

“You go from having a lot - when he was in hospital, for those two months he was having four hours a day of physio and occupational therapy (OT)--and then you come out--and from one day to the next, you go from having four hours a day to one hour a week, which is really not enough.“

“There does need to be much more physio and rehab available on the NHS. We have had our own private physios come in for which we've paid a fortune, and no one who wasn't very well paid could afford it. It's only because of the physio that he's got to the stage he's got to, or otherwise he would be in a wheel chair or certainly not be able to work. There are a lot of people who can't afford private physio, who are much more disabled than they need to be because of the lack of physio. So in a sense, it's not money well saved because it would help people to get back to work if they had the physio.”

Talking about her shock about Andrew's stroke, Jackie said that with a healthy diet, a vigorous exercise regime, and low blood pressure, he had none of the lifestyle factors or medical history classically associated with those most at risk.

“He was always healthy - this is one of the messages I want to get out - I always thought, and so did Andrew, that strokes happened to people who were 16 stone, smoked 20 cigarettes a day, drank 10 pints of beer a day and that was what you got if you lead an unhealthy life. Andrew was very fit; he was running eight miles every other day. He didn't drink that much, and he certainly didn't smoke.”    

According to Jackie, Andrew had had a particularly strenuous session on the rowing machine the night before and had been feeling ill afterwards. Although Jackie had tried to persuade him to go to hospital, he had just put it down to a having a migrane, and had gone to bed.   

“If he'd gone to the hospital the evening before, he might be a lot better off than he is now. One message is to anyone who feels unwell - because he really [had felt unwell] - had he gone the night before, he could have had the clock busting drugs much earlier, and he would be much less disabled today than he is now.“

In an article NHS choices published in the aftermath of Andrew's stroke addressing whether exercise was to blame, it said that while moderate exercise is one of the most effective and proven methods of reducing stroke risk, vigorous exercise was not safe or suitable for everyone. Furthermore, it is not usually recommended for people with a history of Transient Ischaemic attacks (TIAs), who have not received treatment to reduce their stroke risk.

Although there were no obvious signs that Andrew was about to have a stroke, brain scans at the hospital showed that, unknown to him, he had previously suffered two minor episodes.

Despite returning to television September last year, Jackie said that in terms of the road to recovery, Andrew still had a long way to go.

“His speech is fine, his speech was never really affected, and his face is now fine. He still walks with a pronounced limp, and he still has very little movement indeed in his left arm and hand, and is still doing several hours of physiotherapy every day.

I would have thought it'd be at least another year [of physiotherapy] if not after that. He's said himself he will never ever fully recover. His left arm and hand will never be what it was.”

As well as needing help with doing up shirt buttons, shoe laces and going up and down stairs, Andrew also cannot carry things any more with holding a stick in one hand and being unable to move the other. Cooking the family meals which was always his forte, is also no longer possible:

“He can't cook anymore because cooking requires two hands…He used to do all the cooking as he used to love cooking and I hate it. So now we're suffering my cooking,” jokes Jackie.  

Jackie said that one of the things Andrew found most difficult about the recovery process was feeling physically very tired and having to take naps in the beginning, which he hadn't liked with being naturally quite a 'busy' person. Another thing was having to ask for help:

“There's an awful lot of things you can't do with one hand, and I think for someone who's always been very independent, that was very difficult for him.

Asked what the largest impact on their lives has been, Jackie, who has since returned to her full-time role said that the pace of life has very much slowed down:

“The morning routine, it still takes us a lot longer than it would take someone who wasn't unwell to get through the bathroom himself….Getting up and down stairs is also quite slow. It's just the speed of life.”

“There's a lot of things we don't do anymore, you just have to learn to do other things. We don't go for long walks anymore, Andrew doesn't go running or cycling anymore. The kind of holidays we take will be very different. You do lose a lot of things, but what you do gain as I said before, is an appreciation you're still here. This makes you assess your priorities more differently and realise that there are more important things in life rather than the petty things you get upset about…I think we're both more patient and measured these days.”