The care delivery experiences of patients are grouped into the three key phases of their journeys: pre-crisis, crisis and rehabilitation (including discharge from acute care). Where appropriate, issues raised by patients are explored further using findings from the interviews with carers and health and social care staff. Participants have been assigned pseudonyms to preserve anonymity.
The pre-crisis phase
Although some patients had been relatively well prior to their health crisis, many had experienced significant periods of ill health. In particular, patients who had fallen and patients with breathing problems gave instances of having delayed seeking support or reporting accidents, being reluctant to ‘bother’ professionals (in particular GPs). These decisions delayed or averted contact with primary and community care services at a point at which they might have acted to prevent crises. For example, 14 of 18 individuals stated that they had suffered a previous fall, but in many cases had not reported these to health professionals:
I've had a couple of bad falls. They've maybe put me in bed for a few days, but nothing like this! But it's just one of those things – you trip, or you sort-of stumble. [Mrs P, Site 3]
Blockages to connecting ‘closer to home’ services to patients could also occur because of the way that mainstream primary and community services were organised. The interviews with staff members indicated that GPs had a key role in offering care during the pre-crisis and crisis phases, but they thought that changes to the GP appointment system had created barriers. For instance, a member of a COPD team explained that patients found it difficult to arrange timely home visits as they had to phone the GP between 8 and 8.30 a.m.; telephoning later meant that they had to wait until the next day for a home visit, which could be too late to prevent an admission. Some staff praised out-of-hours rapid response teams for being typically faster to respond than out-of-hours GP services but rapid response staff argued that it could be difficult to obtain vital health information out of hours, with community matrons and a patient's own GP not always being available and there being limited access to centrally held notes/assessments.
A few patients linked their current health crisis to an episode of ‘inappropriate’ care in the past. For example, Mrs I (who suffered from COPD) thought that her current readmission was due to her being discharged from hospital too soon:
I suffer with a breathing problem and I know what I can do on a day to day basis, what stretches me and what I just have to pace myself at. But it wasn't any of that – my whole being felt dreadful. It was an effort to get out of bed to walk to the loo, it was an effort to go back to bed. I had no interest in eating anything, I just felt totally lifeless, drained and that was the way I was when I came out in January. [Mrs I, Site 2]
Mrs J who suffered from COPD and heart failure, had a similar experience. Her daughter stated this as follows:
The first time we took her in, it was horrendous waiting eleven hours [in A&E] – and they had to discharge her after 3 days … You could see she was ill! And then 4 days later she's back in again. [Mrs J (daughter), Site 2]
The crisis phase
It has been estimated that up to half of those people who fall and are attended by the ambulance service do not need to be taken to hospital (Snooks et al. 2006). In this study, very few people were diverted at the point of making an emergency call. Mrs N's patient journey not only illustrates a rare example of a successful ‘diversion’ by paramedics from acute care but also illustrates the patient's response to a perceived poor service from her primary care provider. She used her community alarm when she fell:
If I press that [alarm], then it answers in the hall there. That's how I got the paramedics you see, because – not being unkind – you can be on the phone for hours trying to ring a doctor and you don't get anywhere. So I ring now for the paramedics. [Mrs N, Site 3]
The call centre contacted the emergency services and the paramedics decided that there was no need for her to go into hospital: instead referring her to an intermediate care service. The decision appears to have been aided by patient-held notes kept in her home.
Accident & Emergency staff are key in ensuring the timely referral of patients to care ‘closer to home’ services. Efforts in A&E to avoid admissions to the main hospital were not always successful from the patient perspective. Two patients recounted episodes in which they were treated in A&E for fractures and discharged home, but apparently without adequate arrangements for follow-up care and support. Mrs R recalled that A&E staff did not discuss with her how she would manage at home with one arm in a cast; Mr H, that he was wheeled to the taxi area with a pair of crutches without having tried to walk with them first. In both cases, family members contacted community services which were then able to provide appropriate support and treatment. Mr H's daughter arranged for home care from his social services department, which subsequently referred him on to community rehabilitation, and Mrs R learned about adult care services from a family member. Her GP subsequently referred her to the intermediate care team:
I got a phone call within 24 hours from adult care [actually intermediate care] asking me what was wrong – and maybe 2 days later I was all set up; they were marvellous. [Mrs R, site 3]
In other cases, acute care did provide a route to an alternative service. Mrs P fell in the street and a member of the public called ‘999’. Her speedy discharge to a community-based intermediate care service was arranged by acute hospital therapists.
I had to go to hospital, really … they took details in the ambulance and passed me over (laughter), as a parcel … I went to the hospital and they x-rayed the hips and my elbow, because I made a mess of the elbow. I had to stay overnight because I couldn't walk. And then they brought me home, because the care team were willing to look after me and see that everything went OK. Otherwise, I'd have probably had to stay in hospital. [Mrs P, Site 3]
Staff working for care ‘closer to home’ services in all the sites argued that current referral patterns meant that opportunities were being missed to prevent ‘avoidable’ acute bed use. A key challenge was to ensure that the existence and function of these services was known to potential referrers. Just as patients and their families tended to dial 999 when faced with an emergency, many community health and social services staff reportedly often saw this as the obvious first step. However, one care worker defended the decision to dial 999 as reasonable, arguing that they did not have the clinical expertise to diagnose injuries, or assess whether or not referral to acute care was justified.
The patient journeys demonstrated the important role that family and friends play in providing follow-up care. For instance, one woman who lived alone received help from her son and friends for 2 days until a rehabilitation bed became available. However, such requests could put considerable pressure on informal carers. One patient's niece was asked to come at short notice to prevent an admission and felt guilty about her reluctance to do so:
I got a phone call at about 6 o'clock from one of these OT women saying ‘In my opinion [Mrs D] should not have been discharged home on her own – given her fracture in her arm, she can't get up out the chair … Could you come over and stay with her and look after her?’ I said: ‘Well, you've placed me in a very difficult position. It won't be tonight will it? I'm sorry, I can't’. That made me feel terrible. [Mrs D (niece), Site 1]
Another patient had a network of support from older neighbours, but felt they then became imposed upon by professionals:
She's [neighbour] not a carer, she's not a helper – they started ringing her up 7 o'clock in the morning, so I had to have her name scrubbed off. I never tell anybody her name … The last time I was bad they said they wanted to ring [the neighbour] and I said ‘No, I'm not giving you permission’ because she'd just had a broken shoulder herself. [Mrs L, Site 2]
The rehabilitation phase
In some cases, decision-making about ongoing care following an acute attendance or admission resulted in timely transfer and patient satisfaction with the process. For example, Mr K was screened in the hospital's observation ward by intermediate care staff, offered a 6 week package of intensive physiotherapy and transferred to the rehabilitation unit the next day:
They came to see if I was a suitable candidate that they could help here, because they can't take everyone … I told them all the circumstances, and they had a discussion, they said I was a suitable candidate and that I could benefit from what they could offer. [Mr K, Site 2]
Similarly, a respiratory rapid response team assessed Mrs I after receipt of a referral from the hospital's observation ward, arranging immediate community follow-up after her brief admission.
I just couldn't believe it. It all sort of clicked into place. I thought this is actually going to happen … I came home and I just couldn't believe it, the phone rang and [they] said ‘We'll be here in half an hour’ – and they were. [Mrs I, Site 2]
However, many patients and carers were concerned with the quality of acute hospital discharge planning, particularly their lack of involvement in this process. Two patients from different sites, both frail women in their 80s with COPD, experienced unsuccessful discharges and thought that this was because they were not feeling well enough to go home. As one said, it was difficult to argue with the doctors:
I was astonished when the young doctor said ‘I think you can go home tomorrow’. I said ‘I don't feel fit. … What about me going to the [rehabilitation unit] for a bit?’ And he said ‘Oh no, you'd be much better at home, get back to normal’. And so it was against my will. I suppose they would say I finally agreed, but there didn't seem any option but to go home – and it was then I found I wasn't able to cope. … With hindsight, I was a bit weak to go with it, but I was so weak.’ [Miss E, Site 1]
Other patients who required extended periods of rehabilitation encountered bottlenecks in access to bedded rehabilitation with the choice of discharge destination appearing to be driven by the availability of community hospital and intermediate care beds. One woman had hoped to go to the local community hospital but eventually went to a rehabilitation unit:
I was supposed to be going on the Friday and then one of the family rang up and they said ‘She won't be going on Friday, she'll probably go on Monday’. And then later on, my grandson came and […] asked where I was going and they said [community hospital]. And then the next visitor that came asked and they said ‘There's no room at [community hospital], she's going to [rehabilitation unit] on the Monday’. [Mrs B, Site 1]
Acute hospital staff agreed that there were many delays arising for a number of reasons. These included a lack of suitable placements for ongoing care and conflict between the multi-disciplinary team's duty to make a safe discharge and patient preferences for discharge timings and destinations. However, some staff argued that assessment processes were now undertaken too quickly. For instance, while home visits were seen as important to identify future hazards in patients’ homes, a social services staff member observed that pre-discharge visits were now less common.
Communication problems between staff working in different settings were also seen as causing delays. Hospital staff highlighted difficulties in obtaining information about any community-based services that a person was receiving prior to admission and that might support ongoing care at home. Staff from community rehabilitation teams similarly argued that communication difficulties could delay patient discharge from acute care.
Many of the patients who received ongoing care from rehabilitation services welcomed the fact that they were treated as individuals and the holistic and integrated person-centred approach. As one daughter put it:
It was a whole package. … It wasn't just my mum, they actually thought about my dad as well, because he's 81 and he's got breathing problems. … They came up with good ideas. [Mrs M (daughter), Site 3]
Those receiving home-based rehabilitation (and their relatives) were also very positive about being able to have this care in their own home:
I'm a lot happier at home, because you can be your own person, you can do what you like, as far as you're able to, and there's no restrictions. I can have my meals when I want them and go to bed when I want to and simple things like that. It makes a difference. I don't like being regimented. [Mrs Q, Site 3]
However, staff interviews again revealed ways in which communication difficulties affected the ongoing care of patients. Primary care professionals expressed concerns about the discharge summaries sent by acute hospitals and some community staff deplored the duplication of assessments by acute and community therapists. However, other community-based therapists gave reasons for reassessing patients following a referral from an acute hospital including the need to identify the therapy required, the patients ultimate discharge destination, and whether social services had been notified.