Eighteen participants including survivors of TIA/stroke, carers, OTs, GPs, an employer representative, and clinical commissioners participated in this study (Table 1). Six survivors of TIA/stroke and two caregivers were recruited from two GP practices, while two additional patients were recruited from the local vocational rehabilitation service. The analysis resulted in two main themes:
For each of these themes, ways of addressing the highlighted issues were discussed in the focus groups.
Mismatch between patient and carer needs, and what is provided
Awareness of invisible impairments
Patients’ and GPs’ awareness of hidden TIA/stroke impairments were different:
‘ What’s very interesting for me listening to all of this [that is, patients’ and carers’ discussions] as a GP is that as a doctor we have this very sort of black and white view of a stroke I think which is shared I suspect by society and we all think the same way that the stroke is about loss of power and loss of vision and those sorts of things and yet everything that you’re saying is about subtle changes, it’s about memory, it’s about concentration, it’s about fatigue which are things that are really hard for other people to recognise and really hard to explain and then perhaps are ignored but seem to be in a sense much more important than the obvious signs of a stroke.’
(GP1)
Assessing invisible impairments such as fatigue was also challenging, even for an occupational health doctor, because of lack of a formal tool:
‘When I was working on patient medicine you would actually go off what the patient, what the client themselves was saying their ability was at that point. So they would say, “Oh well, so how long would you be able to say for instance do your work, up to the point where you would have to take a break?”… there’s no formal assessment [for fatigue] … it actually just goes off the patient, off the client’s opinion.’
(Clinical commissioner [CC]2)
Challenges during GP consultations
Although both survivors of TIA/stroke and clinicians felt that GP support is important, patients and carers felt that there were major barriers for GPs to play a role in aiding survivors of TIA/stroke to return to work. Time of consultations was limited. Further, there was the belief that GP consultations were primarily for medical issues, while job-related discussion topics were felt as less appropriate and they were unsure how the GP consultation could help in returning to work:
‘Well my experience of the GP is exactly the same, I go in, he’ll take my blood pressure, look at a blood test, look at the drugs I was on, you know, any issues but I don’t know what else I expected from him.’
(Patient [P]3)
Return to work issues are complicated
Planning return to work was considered a difficult task at times by GPs and clinical commissioners:
‘It all depends upon stability of the situation to be honest with you and predictability as well because if you’re trying to get a patient, trying to get a client back to work and you’ve not had a period of stability in their condition, it’s very hard to actually sort of make any formal plan.’
(CC2)
GPs described filling sickness or fitness notes challenging and faced the issue of employers coming back to them asking for a sicknote instead of considering work adjustments:
‘… and when I, with most employers, when I attempt to write a fit note … trying to make some suggestions about amended duties etc., and most employers I just get a note back usually via the patient going “What? Can you write him a sick note?”’
(CC1)
Improving the role of primary care: a point of contact for work-related issues
As GPs were considered very busy and mainly focused on the clinical aspects of TIA/stroke recovery, having a designated point of contact in primary care clinician to contact for post-TIA/stroke work-related issues was suggested and was felt important by patients and carers, as well as GPs:
‘Yeah. I mean you could train a nurse, it doesn’t necessarily have to be a GP does it? Nowadays they have specialist asthma nurses who know more about asthma than the GP. So you don’t necessarily have to skill up to the extent that you need to know all of the neuro implications but you need somebody who can facilitate the questions and finding the answer and say “OK, I don’t know that but I know where to go to.”’
(Carer [C]1)
However, a concern would be that services are duplicated and even more complex:
‘It’s an interesting point isn’t it, whether by doing that you just duplicate and make things more complicated or whether it actually simplifies things because there are clearly all these other agencies, Citizens Advice, occupational health, all these other people doing similar sorts of things and whether if you provide something within GP practices you’re just providing another layer of complexity that’s not communicating with anyone else.’
(GP1)
Clinical commissioners mentioned a pilot, ongoing at the time, of a software tool aimed at helping the process of navigating and signposting to current services:
‘… a decision management software tool which has been purchased … we purchased a licence for a pilot number of practices, about twenty odd practices and this is meant to be something that sits on the patients, on the GP’s desktop and it gives, and if you put in say stroke it will ping up saying, “Here are the local services for stroke.”’
(CC2)
Lack of coordination/communication between the different agencies involved and primary care
Awareness of services
Despite recognising that work is good for patient health, in terms of suggesting community services for helping with return to work and staying in employment, GPs described difficulties with knowing about all services available and pointing survivors of TIA/stroke to the right ones. GPs and clinical commissioners were also unaware of the option of direct referral between primary care and community occupational services, which was thought to be only through secondary care:
‘So can GPs refer to your service, that’s really …?‘
(CC3)
‘Yes certainly, absolutely yeah.’
(occupational therapist [OT]2)
‘That’s interesting. Why don’t we know about it?’
(CC3)
The lack of a structured organisation of services meant that a large number of referrals to neurorehabilitation teams came from a small group of practices who knew about the service.
Lack of organisation
There was confusion about the role of different stakeholders in the process of returning to work after a TIA/stroke. Participants were unaware of differences between the role of an occupational health department and an occupational therapist. Moreover, stakeholders, including the employer representative and the GPs, were not aware of what sort of role an OT could have, such as issuing Health and Work Reports that patients could use to claim employer’s sick pay for short-term absences and to support GPs filling in sick notes;17 liaising with family members, occupational health, and work managers; and giving recommendations about work.
In addition, only a few patients had experience of the OT services ongoing at the time of the study:
‘I think you’re right. Yeah, ensure a patient has occupational health review and I must say I don’t know what else to do from an employer’s side and I don’t fully understand actually where occupational health and you guys [OT] come in in a way … does that mean I should be referring them so they are having occupational health, but can you see them as well, or is that a waste of NHS resources.’
(GP2)
As neurorehabilitation services are not centrally organised and need referral from primary or secondary care, it is not available to all patients, especially patients suffering from invisible impairments such as fatigue or memory and concentration problems:
‘… however, there are sometimes people being missed as well, I don’t know why that happens though, I had a patient a while ago […] was properly mobile and I think that’s when they decided he didn’t need community services at home, but it turned out that he was really struggling and got through the GP and physio direct back to us, so it still happens that people get lost in the system somehow.’
(OT2)
The importance of OT support
Patients who suffered from stroke more recently and had access to the local OT service (the neurorehabilitation team) highlighted their important role in facilitating successful return to work:
‘I keep singing their praises, the neuro health rehab team and Remploy, she [OT from the neurorehabilitation team] brought Remploy in and somebody else, I can’t remember who they were, basically a contractor saying “Right, this is the chair he needs, this is the software he needs, this is the computer keyboard he needs, make sure he’s got a parking space within a reasonable bit of the building” … if I’d actually gone back to work, that would have been the absolute very solid concrete help.’
(P3)
Survivors of stroke described that an important role of the neurorehabilitation service was to connect people who suffered from a stroke and enable peer support:
‘I got discharged from hospital and then really you’re not dealing with anybody else in your predicament … and it wasn’t until again the neuro rehab team last summer set up a returning to work, there was like eight sessions over eight weeks … well I met other people in the same boat and that was quite an eye-opener and also it’s very, very encouraging.’
(P3)
Linking with other services
A lack of communication between GP surgeries and other services, as well as agencies such as job centres and occupational health departments, was pointed out. OTs and clinical commissioners mentioned the importance of linking with other services, getting to know what is on offer, and how they could be linked together for survivors of TIA/stroke of working age, though the ongoing changes in the service structure were making the process challenging:
‘… we’re beginning to have conversations with the whole mental health team really because we’ve now joined together so I think in six months’ time I’d hope to be able to sit round a table and say we’ve actually made some movements there to link the two services together. Because obviously they’ve got Recovery College, they’ve got all sorts of things there and we’re now in the same organisation but as professionals we’re not yet getting together and we need to begin to make those contacts.’
(OT2)
A major problem for the neurorehabilitation team being able to offer their care to the local stroke population was their limited capacity, and that the service is paid a fixed amount/year, rather than being commissioned based on demand:
‘The other problem of course is how much capacity you’ve got because if all GPs suddenly think, “Ah I’ve got three patients … for you” … you consider the number of practices just in City itself that you deal with, you could be swamped.’
(CC3)
Commissioning such a neurorehabilitation service, though, was considered challenging without a strong financial argument for cost–benefits:
‘… Yeah, and then have to be a financial argument for doing that as well, I mean that’s the biggest thing.’
(CC2)
Another barrier to linking the services together could be the commissioning model. In the case of mental health, commissioning is separated from non-mental health, making the linking services challenging:
‘… low motivation, depressive symptoms go up and that then makes it, you know, that is non-synergistic with doing anything else like getting back into work and, you know, mental health services are quite separately commissioned etcetera, than physical health … we can’t necessarily suddenly transfer loads of funding to one organisation to do it because the other organisations will complain but you could find a way of integrating these psychological support programmes better with stroke.’
(CC1)
Improving communication: a rehabilitation assessment integrated with the electronic record
Through the topic guide, participants were prompted to discuss a potential online rehabilitation assessment tool to provide a post-stroke picture over time of patient needs and functional impairments, which survivors of TIA/stroke and their carers could access and share with interested parties.
Survivors of TIA/stroke and carers liked the idea of an objective assessment tool they could fill in and help them to become aware of impairments and problems, considering some patients may lack insight:
‘… a tool to actually try and figure out where you actually really are, and what actually the picture of where you might be, as opposed to as I say my own very subjective position.’
(P3)
Other stakeholders were also positive about the possibilities of an online tool. GPs were particularly interested in quick access to a patient’s up-to-date functioning:
‘… I think that’s perfectly reasonable actually, so especially if it were, I think in a template form so I can actually just tick on a certain area and then I get a kind of functional status of the patient which is the most recent … I think that is a bit like the End of Life care, it’s something that should be very easily … that would reduce our time.’
(GP2)
The sharing aspect of such a tool was also recognised as important by stakeholders:
‘… a lot of places are looking to read-only access to other people’s systems … SystmOne can get overloaded if everyone is writing into it, but offer practices that want to, anyone who wants a widget where they can see what the psychologist is doing.’
(CC1)
Another major concern is the privacy of patients and appropriate access to shared personal data:
‘… I would be very careful about who else has access to all this data … you might not necessarily want people to have access to some of that.’
(P8)
A potential solution that was mentioned by patients is the idea of a compartmentalised online record, so each party could access information that is only relevant to them.
Improving communication: a patient-held shared-care plan
Survivors of stroke discussed the problem of remembering the plan communicated to them by healthcare professionals and that a written report might greatly help:
‘Yeah. I think the written record is a very important, I mean I sometimes when I go to see a specialist nurse or something like that and my daughter asks me when I get home “What did he say?” and I’ve lost half of it.’
(P1)
Other stakeholders mentioned the missed opportunities in discharge documents/a shared-care plan. For example, GP and clinical commissioners commented that meaningful cognitive screens, management plans, and information about community services are not always included in hospital discharge letters:
‘… that’s a real lost opportunity not just to send a simple letter at the point of discharge to the patient, the GP saying, “Here are the long-term services available and here’s how you get back into them if you’re having problems.” Why are we not doing that?’
(CC1)
‘Yeah. It’s about empowering the patients actually and signposting them, kind of making them aware of what’s there.’
(CC2)