The patient journey after stroke: what services do patients in Lothian access and what are their experiences – a qualitative exploration.

Introduction:

National guidelines have been generated in order to advise on optimal service provision after stroke during the acute, rehabilitation and community stages of management (RCP 2004, SIGN 2002, Adult Rehabilitation Framework in Scotland, 2007, Kerr Report 2005). Local evaluation and review of community based service change falls within the remit of the Lothian Managed Clinical Network for Stroke and a specially appointed Allied Health Professional Consultant. Interviews undertaken in a qualitative study to explore experiences of a Functional Electrical Stimulation clinic resulted in additional rich data regarding patients and their carers experiences during all stages of their journeys after stroke.

Methods:

Thirteen stroke patients and ten carers managed within NHS Lothian were interviewed using semi-structured interviews within the framework of Interpretative Phenomenological Analysis. Purposive sampling ensured a variety of experiences. Interviewees were asked to tell the story of their stroke from initial symptoms to the day of their interview, at least six months post-stroke. Transcripts were thematically analysed.

Results:

Themes emerging from the data provided insights into widely varying journeys through acute, rehabilitation and community phases of management. Of particular interest were contrasting positive and negative experiences of seeking help after onset of symptoms, information provision throughout management, routes for accessing services, and highly varied geographical service provision.

Conclusions:

This study highlighted the value of qualitative research in investigating service provision to stroke patients in Lothian, enabling comparison with national guidelines. The themes provided an in-depth understanding of both the positive and negative experiences of the journey through local stroke services as experienced by users and their carers, particularly highlighting inequalities in community service provision. This information may help inform future developments in the provision of community based services to stroke patients in Lothian.

Lisa Salisbury1, Jane Shiels2, Cathy Bulley3, Caroline McGuire2, Katie Wilkie2, Mark Smith4

1Centre for Integrated Healthcare Research (CIHR), Edinburgh University, Edinburgh; 2Physiotherapy Department, Astley Ainslie Hospital, Edinburgh; 3Physiotherapy, Queen Margaret University, Edinburgh;4Leith Community Treatment Centre, Edinburgh.

Acute

Rehabilitation

Community

Onset of strokePositive Experiences Negative Experiences

“I said to my wife, you know, something’s wrong. She made me go to the doctor. I went to my doctor who I said I think I’ve had a stroke, he said no you haven’t…… came home here, about 11

o’clock at night my wife phoned the emergency doctor, we went down to see him. Nice chap, gave me half an aspirin, said see

how that goes. (Patient)

Patient subsequently admitted to hospital with stroke

“Of course it was on the 24 hour emergency line and we got put onto a person, I think it was a nurse, and I told her all

what had happened and she said she would get back to me and a doctor got back to me actually very quickly, and I

discussed the symptoms and he said he wasn’t going to wait any longer he was going to call for an ambulance” (Patient &

Carer)

“He was in the assessment ward for 5 days for they didnae have a bed on the stroke ward and then he went up to the stroke ward but it was a severe stroke” (Carer)

“He went to hospital was OK but after 7 hours on a trolley in a corridor I was not OK and it just hit me hard” (Carer)

“I got a scan within 24 hours and by sheer luck one of physio’s was doing overtime in the infirmary and she was

sent to see me and she actually – I mean by that time I was, well, if this is it let me go, I’m finished. But she got me out of

bed and she said stand up, I thought blimey” (Patient)

“And then I started to get back on my feet, balance exercises and strength and stamina exercises, eventually moving onto

the treadmill and exercise bike” (Patient)

“So the occupational therapist thought because of the way I was sitting……..you don’t look very comfortable. So thankfully

she went away and got me this wheelchair which was more comfortable and as I got used to it I started to sort of get more mobile with it using my right leg and the one hand which did a

lot for my confidence and my self-awareness” (Patient)

“I do understand that some of the guys that were very much older and had their stroke….they had basically said well, my

numbers up, I’m no really going to try very hard. But no everybody’s like that on that ward and that’s what got me

that the young person, the young people on that ward were basically treated the same and that did disturb me quite a bit”

(Patient under 65 years of age)

“I found that the nurses were very lacking, a great deal of lack of understanding things” (Carer)

“We’ve actually through Chest, Heart and Stroke started to go to the gym on a Thursday down at the college in Livingston”

(Patient & Carer)

“They have a stroke nurse that follows up all the patients for a year, and I had a super girl, and she was able to organise lots

of things for me, and one of the things she organised was access to work” (Patient)

“There is never enough follow up and back up in my eyes, and that’s on behalf of a lot of other stroke victims. It cuts off

too quickly and it’s sheer luck if you can get a back up” (Patient)

“I took him to the private physiotherapist because he didn’t get any physiotherapy through the hospital after he came home. I took him to the private physiotherapist for over a

year. Every week” (Patient)