Patients and carers did not talk in terms of “coordination” or “integration” of services. Rather, their focus was on what features of a service reduced the workload of living with a long term condition and made life simpler.
Services that made life simpler
Patients and carers receiving the community matron service had complex needs and were generally older than other respondents. They described how the community matron took over many aspects of the workload such as sorting out prescriptions, referring onto and obtaining rapid access to other services, being a mediator between all other services, and providing a sense of security which reduced anxiety.
…she (CM) does my blood pressure, sounds my chest, any worries, just no worries at all, I mean…It’s general enquires, i.e., there’s no cure but we’ll give you as much relief as we can and that’s…Yes. That’s it basically isn’t it, yes. So I mean she’s (CM) quite good…
“Alice” (emphysema) and “Donald” (carer)
There was also some evidence that the community matron (CM) service was reducing patient visits to the GP.
I’ve never requested to see a doctor, I just usually ring up “can I make an appointment to see (CM)?” Well they should all be working together. And she’s (CM) always been fantastic and if she’s felt that she would like me to see a doctor, “I’ll get a doctor in to see you”,
“Stan” (emphysema, arthritis) and “Mary” (carer)
The respiratory services were also spoken of in positive terms by patients. Again, these respondents were from the older age and of importance to them was ease of access to the service, particularly the nurse consultant (NC).
(NC) … changed two of my sprays … Which made a big difference but I think the main thing is that I had always got antibiotics and steroids here so I know that I can start on them if I feel bad, I haven’t got to wait for an appointment and I ring (NC) up and (NC) comes down.
“Lily” (Chronic Obstructive Pulmonary Disease, osteoarthritis, osteoporosis)
The neurological service was also well evaluated by service users who ranged in ages and were living with either Parkinson’s disease or multiple sclerosis. For them, what was important was the comprehensiveness of a service which included rehabilitation and social care support, plus being able to self-refer back to the service as required.
They (Neurological service) make you feel looked after and considered, you know, they make you feel sort of as if they’re caring about you, and that’s obviously clearly just the way the system works, the way it does dovetail together I think really, it made you feel like you weren’t being fobbed off or anything like that, you know, just basically you felt looked after really … you’ve always got that security haven’t you, you feel like you could sort of just give them a ring…that’s a nice feeling you know.
“Nicola” (multiple sclerosis)
Issues with services
Services that were perceived to be personalised, gave a sense of being cared for, and provided a sense of security were described positively by respondents. However, the data also indicated that a number of service users felt there was a lack of coordination between the different aspects of the services they were receiving. Examples included blood test results not being transferred between services, and the need to repeatedly give their health history to different clinicians. Some respondents with more than one condition also described issues around being “separated” into diseases within the clinic/practice-based clinic.
I go down to (nurse practitioner running the GP based clinic) and she says ‘Oh, only one thing this time, we’re only here for so-and-so’, and I’ve got a list…
“Fred” (Diabetes type 2, bladder cancer, hypertension, atrial fibrillation)
For Fred and his wife this meant that they would have to make a number of separate appointments to address all his needs and making the appointment was equally challenging.
… we always have problems getting through to the surgery, then getting an appointment. It seems that if you can go online, but I don’t like using a computer… I don’t want computers.
Hassles of living with a long-term condition
The biographical discussion at the beginning of each interview suggested that patients and carers were preoccupied with the “hassle” of living with a long-term condition with narratives focused on how services could reduce it. Within this paper we use Lazarus’ definition of a hassle being “experiences and conditions of daily living that have been appraised as salient and harmful or threatening to the endorser’s well-being” (p376) . Included within these hassles was dealing with the consequences of fatigue, immobility or the difficulties in managing cumbersome equipment.
It’s taking the oxygen everywhere, this is the biggest thing probably. It’s okay taking bottles but you’ve got that big machine so you’ve got to lift that in and out the car. As you get older it’s, it doesn’t get easier does it?…we’ve given up on holidays now really, haven’t we?
Patients and carers’ descriptions of the challenges they faced on a daily basis could largely be linked to the consequences of the condition they were living with. However, irrespective of the age or predominant long-term condition of each respondent there appeared to be a common hassle which was raised by respondents themselves, often during the closing stage of the interview where they were invited to say anything else about the services they received not already covered within the interview.
The repeat prescription – a recurring hassle
Even for those patients whose condition had minimal impact on their daily life, there was a recurring hassle that the majority of respondents reported; the repeat prescription. Liam was a younger man with type 1 diabetes mellitus. While he was generally positive about his experience of services, he also described his issues with managing his prescription.
…I find it a little bit frustrating at times because it’s all repeat stuff and then occasionally things won’t be in and I have to chase them…I get frustrated with on occasions if I’m running low on, whatever it is, needles or insulin, and I’m chasing and they say “Oh, won’t be in till Monday” …so that’s probably my only real, sort of, bugbear.
“Liam” (Diabetes type 1)
While the pharmacy not having stock available was commonly reported, the main problem appeared to be the amount of time not only spent on returning to the pharmacy once items came into stock, but also the extra time it took to manage prescribed medicine that was not synchronised.
I’ve got two pages of repeat prescriptions and goodness knows what, and they’re not, they don’t all fall at the same time, you know, so I spend an awful lot of time…
Many patients such as Kath managed this issue covertly rather than asking for a review of her medication.
…sometimes I know that I’ve got perhaps three or four things to get and there’s another one which I know I’ll have to in a week’s time, so I’ll say to the receptionist “look I know this isn’t due yet but to save me” … But you couldn’t do it with
of the prescriptions, you know, just the odd one.
On questioning, none of the participants we interviewed remembered receiving a medication review from their pharmacy. There was also evidence that they did not see the pharmacist as having a significant role on medicines management.
…there’s forty things on his repeat prescription and my three as well…
And do you have to order them once a month?…
No, it doesn’t work out, they never all run out at the same time…
And has the chemist
said “oh let’s try and get this all sorted out for you”?
I don’t see how they could because some are for two months, some are for a month, some, you know?
And does the chemist offer you a medicines review?
Doctor does that doesn’t he? No, the doctor, looks through my tablets whenever they do, you know.
“Sydney” (Diabetes type 2)
Alex and his wife described the effort required in making the repeat prescription more manageable.
The prescription. That’s just the sort of thing that you could really do without when you’ve got this condition… …I wrote clearly on my request, ‘Please can I have two months supply of L-Dopa’, because it does appear to help my symptoms and it would put it in synchronisation with the rest…I’ve got a maths degree…but when I asked the doctor for two months when she first prescribed it, she said ‘Oh, okay, I’ll give you two months, that’s 90 tablets’, and this is where the illness is annoying, because I was still able to work out that a month being roughly 30 days, 3 tablets a day, that’s only one month, and I sort of said ‘That’s only one month’. She said ‘No, no, that’s two months’, and I panicked a bit and I didn’t follow the argument through that it should have been 180.
“Alex” (Parkinson’s disease)
In one extreme case, Jeff with heart disease cared for his wife Mabel with rheumatoid arthritis, emphysema, atrial fibrillation and inflammatory bowel disease. They were both on multiple medications and were registered with different practices. Jeff described how he took the repeat requests to each surgery, returning two days later to pick them up and deliver to the pharmacy. When collecting the prescriptions he was frequently told by the pharmacist that he cannot dispense certain drugs for Mabel because of interaction alerts, with Jeff being asked to return to Mabel’s GP to query this. As for a number of other respondents, managing the repeat prescription proved to be one of the most demanding tasks on a week-by-week basis. This example illustrates the complexity of medication management coupled with a divided system between prescriber and dispenser that left the carer feeling unsupported.
The majority of patients we interviewed were on an established drug regimen (Table 2), but prescriptions only lasted 28 days. Although many respondents reported difficulties with the repeat prescription, there were some notable exceptions.
Seamless repeat prescription systems
Different models of prescribing and dispensing repeat prescriptions were described. There were examples of the community pharmacy providing a service which removed any effort on the patient’s part in managing the repeat prescription, with the pharmacy ordering, dispensing and delivering the medicines to the patient’s house.
Despite having co-morbidities and complex needs, patients and carers receiving the community matron service did not report issues around their repeat prescriptions. Their narratives included accounts of the community matron organising seamless prescribing, medication review and delivery of the prescription that negated this particular hassle of living with chronic conditions.
We hadn’t appreciated the depth of the Community Matron’s, sort of, the sweep of her thing… she can call in more things than we thought, we thought she was just coming round to check on how we were, but apparently she can control quite a few things like our prescriptions.
However, for many the time involved in submitting prescription requests in person, picking up the script, delivering to the chemist and then returning a few days later only to find that a number of items were out of stock proved to be the final irritation in negotiating long term conditions care delivery. Problems were exacerbated when the prescription only lasted 28 days meaning that the cycle of ordering, picking up, delivering and picking up was repeated more frequently.