Geographical variation in resource availability

Patients and health-care professionals attributed the variation in usual care, in part, to geographical variation in resource availability, leaving available staff and services overstretched, and unable to meet demands consistently across the whole North Wales area. This was reflected in comments from patients, such as the care received ‘depends where you live’ (male carer, Flintshire and Wrexham) and that optimal care may not be available ‘if you don’t live in the right postcode’ (female patient, Flintshire and Wrexham). Health-care professionals also acknowledged that the provision of NHS rehabilitation services, social care provision and access to charity services was a ‘postcode lottery’ (reablement team, Ysbyty Gwynedd) and that, even for services that are universally available, there may be variation in who is eligible to receive them:

We could provide a service under our eligibility criteria but other counties have got different eligibility criteria.

Reablement team, Ysbyty Glan Clwyd

The resultant variation in care was apparent in the acute setting and throughout patient rehabilitation. Although the patient and carer focus group participants particularly emphasised the impact of resource scarcity during the post-discharge rehabilitation period, they also raised it as an issue that they had experienced during their stay in the acute hospital. Patients observed that ward staff struggled to cope with the volume of highly dependent patients: ‘there is too much work, not enough nurses’ (female patient, Gwynedd and Conwy). As a result, some participants experienced delays in care and were incontinent or left in pain without medication:

I wet the bed a couple of times and I felt so embarrassed.

Female patient, Gwynedd and Conwy

I was initially in a room on my own because the place was so full, and I just could not get hold of anybody to give me the morphine when I needed it.

Female patient, Gwynedd and Conwy

Despite these challenges, findings from the focus groups with health-care professionals suggested that there was a good level of standardisation at the acute phase of rehabilitation, with early mobilisation being ‘quite routine’ (occupational therapist, Ysbyty Glan Clwyd) within 24 hours after surgery, which was in line with NICE guidance.⁷ However, the impact of post-discharge resource availability on planning discharges from the acute setting, and consequently the therapy given in hospital, was apparent, with therapists often having to take a flexible approach:

We usually have plan A and plan B because if the bed [in community hospital] doesn’t come up they are going home.

Acute hospital occupational therapist, Ysbyty Gwynedd

The variation in post-discharge rehabilitation was not limited to patients who were discharged directly to their own home, but was also experienced by those discharged to community hospitals:

There was another ward with, they were all erm . . . different types of breakages and whether there wasn’t room the day I went there to go in that ward. I think if I had been in that ward I may have been, had more exercises to do you know.

Female patient, Flintshire and Wrexham

They taught us in detail how to climb stairs, with a stick, and with crutches, and they sent us to walk in the corridors and outside . . . I found that extra fortnight to be very valuable.

Female patient, Anglesey and Gwynedd

Although some patients had positive experiences or found that specific aspects of their rehabilitation were well implemented, there was a general sense of isolation and that they would have appreciated more consistent input from health-care professionals:

I don’t think the aftercare is what it should be. You are just left to look after yourself more of less.

Female patient, Conwy and Denbighshire

Health-care professionals in one area acknowledged that some patients may go home with no care, but postulated that it was ‘probably rare to have absolutely nothing’ (occupational therapist, Ysbyty Glan Clwyd) and that there would likely be some level of community service engagement, even if there was no occupational therapy or physiotherapy input from the hospital.

Referral procedures and service awareness

Variation in referral processes and in some cases the criteria for accessing a service meant that staff had to be aware of different referral pathways in different areas, which could cause delays in referral. In particular, a lack of uniformity in referral procedures for different community hospitals was identified as an issue by health-care professionals:

You have five referral forms, you can’t just have one, and there you are that’s done, so that takes time.

Nurse orthopaedic ward manager, Ysbyty Gwynedd

There was variation in the delay that patients experienced at the start of their rehabilitation and when progressing to more demanding activities. This was partly explained by different referral processes in health and social care. One physiotherapist commented:

Social workers have got their own timescale . . . they only have a panel once a week and that’s on a Monday, if you refer any day like Thursday afterwards they are going to miss that panel so you will have to wait an additional week.

Nurse orthopaedic ward manager, Ysbyty Gwynedd

A number of patients and their carers also commented that there had been a delay in their referral to physiotherapy. This was particularly noted to be a problem for patients who had received some physiotherapy after discharge but who had to be referred again by their GP when the initial sessions had come to an end:

If she goes to the doctor the doctor doesn’t really, he only refers you to the hospital, then you have got to wait an appointment, which there is no one you can actually say can you come next week and tell me if I am, if it’s . . . sort of all right.

Male carer, Gwynedd and Conwy

Patients experiencing delays because of problems with referral systems or variation in service provision in different areas felt that they would have benefited if they had access to these rehabilitation services immediately following discharge and that such delays in treatment were a barrier to them achieving their recovery potential:

There have been long gaps and that very slow start and I know, the physio[therapist] I saw, not immediately when I started but soon after, was very concerned about that delay it had made it a lot more difficult for me, and more difficult for her to get anything moving.

Male patient, Anglesey and Gwynedd

It took longer than perhaps it could’ve before I actually got to the stage where I did go to the gym. I think I could’ve done with that being happening a bit sooner.

Female patient, Anglesey and Gwynedd

Others were very pleased with the care that they received and felt that it had helped them progress quickly:

I was very grateful for the care I got . . . in the hospital and to resettle after being in hospital . . . within some 3 months I went back to driving a car.

Female patient, Anglesey and Gwynedd

Some therapists thought that it was challenging for the acute staff and GPs to know the full extent of services that were available in different areas and that this may have contributed to some patients not being referred to services that they were eligible to receive:

There is not always a great awareness of the acute team of exactly what services are in which place . . . I think we could definitely signpost them better to these . . . GPs need to know how to . . . what services there are and how to signpost.

Occupational therapist, Ysbyty Glan Clwyd

Physiotherapists based in community hospitals who ran the falls prevention classes also commented that, even when patients were referred, it was often at a later stage than they would expect:

You need to refer them the minute they are showing signs of impaired balance, or problems or at risk of falls. I think we are missing a lot, of the prevention stuff.

Community hospital physiotherapist, Ysbyty Gwynedd

It was also suggested that awareness in patients could be raised and that, if patients were able to self-refer, this might help to overcome the problems. However, therapists acknowledged that available resources would limit this and it also raised an issue of relying on the self-motivation of patients to seek out additional therapy:

Self-referral, you know making patients aware, posters up in GP surgery, have you lost your confidence, have you got a balance problem you can self-refer and then but it’s the resources to cope with that then, that are missing.

Community hospital physiotherapist, Ysbyty Gwynedd

Tailoring of rehabilitation to individual needs

Health-care professionals spoke extensively about tailoring patient care according to individual needs, which was determined by comprehensive assessment consisting of a background history, past medical history, social history, an assessment of the present condition, a physical assessment and an assessment of patient goals. The outcome of this assessment would determine where a patient might be referred. A recurring theme in the staff focus groups was that individual patient’s needs and situation varied greatly, so rehabilitation needs to be individualised.

It depends completely on the patient, you can’t just say well this is what is going to happen to every patient, they vary so much . . . there is different avenues depending on what they present.

Community hospital physiotherapist, Ysbyty Gwynedd

Health-care professionals’ knowledge of these factors was extensive and they were aware of several options for patient care that depended on a patient’s home situation and comorbidities. For initial rehabilitation, the type of surgery carried out was also a major factor:

It depends on what, what procedure she [the surgeon] has done to fix the fractured NOF [neck of femur] as to what level of interventions we do.

Occupational therapist, Wrexham Maelor

While discussing the patient scenarios, there was a consensus among the health-care professionals that the planned care for each patient would be tailored to his or her specific needs. This included signposting patients to certain services but the health-care professionals also highlighted the fact that they would not, for example, assess all patients as needing to attend falls prevention or balance classes, even if their fracture had occurred as the result of a fall; referral would depend on the cause of the fall:

You are dealing with very angry relatives who were under the presumption that because they are under our service, that they will automatically get care and they won’t, not unless there is a need.

Clinical specialist physiotherapist, Wrexham Maelor

Although the tailoring of post-fracture rehabilitation to individual patient needs is recommended in NICE guidelines,⁷ it may contribute to a significant degree of the variation reported within these broadly defined care pathways. Some participants held the perception that more comprehensive care was given only to patients who were assessed as being less able to cope alone, with others who may have been more independently mobile feeling that they would still have benefited from input from a health-care professional. One patient felt that, because she had shown self-motivation to exercise independently, it was difficult for her to receive physiotherapy input, commenting that ‘they just could see that I was motivated and doing things and they were needed somewhere else’ (female patient, Gwynedd and Conwy). Health-care professionals also commented that, although a patient might be referred to a service, they might not receive the maximum available input, for example 6 weeks with an intermediate care team; how much care was actually given would depend on an individual patient’s needs, which might be defined differently in different areas or by different therapists. ‘Usual care’, therefore, was hugely variable.

What to expect following hip fracture

Patients’ initial need for information related to the physical aspects of what had happened to them during their hip fracture and what they should expect during their recovery. In particular, there was a need for information about what activities they could do safely as they were uncertain whether they should exercise or ‘lie on your backside for 5 weeks’ (male carer, Flintshire and Wrexham). Another patient stated that:

I didn’t know what to do I didn’t know whether to sit, and rest or try to exercise or what nobody told me anything . . . people don’t explain . . . tell you so that you can understand. You just, left to ponder it over for yourself.

Female patient, Conwy and Denbighshire

There was confusion among patients regarding the hip fracture precautions given on discharge, with the wife of one patient reporting that, although they were told that her husband was not allowed to climb the stairs alone, they had no understanding of why this was as ‘nobody ever told us that’ (female carer, Flintshire and Wrexham). This lack of clarity left patients feeling isolated and unsure about what activities they should resume, a problem that was compounded by a feeling that the time post discharge was a ‘no man’s land’ (male carer, Gwynedd and Conwy), with patients and carers feeling unsure about who they could seek advice from.

Although some patients reported good experiences of ongoing rehabilitation after discharge from the hospital consultant, for others there was a perception that at this stage in recovery hospital consultants ‘didn’t want to see you’ (female patient, Gwynedd and Conwy) and that GPs felt that they were unable to help because of the responsibility lying with community therapy teams. This confusion surrounding where patients should ask for help meant that delays in receiving rehabilitation were not communicated to them, and patients did not know if they would receive any services at all. Although patient and carer focus group participants were dissatisfied with these delays, they also stated that they could have accepted them if it had been clearer at the beginning that rehabilitation would happen eventually:

The GP just seemed to be saying it’s the physio[therapist]’s responsibility. I didn’t know where the responsibility was at all. I think if there was someone to talk to or whatever, if I knew that it would lead into rehabilitation then that would have been better.

Male patient, Anglesey and Gwynedd

For patients who did receive rehabilitative input from health-care professionals, their need for information changed over time; although the initial input was especially helpful, they needed support throughout the entire recovery process:

There was a whole series of questions I had that had come up over the previous 3 weeks and I think the ability to go and talk to someone, with different experience and knowledge, was very important for me now.

Male patient, Anglesey and Gwynedd

There was also a common feeling among participants that the problems that they faced were related to accessing services, rather than the quality of the services that were provided, and once these services had been accessed patients were satisfied with the majority of the care that they received: ‘Care is good, communication is rubbish’ (male carer, Flintshire and Wrexham).

A draft of the intervention workbook had been developed by the time of the later focus groups. This contained information relating to the physical aspects of fracture and surgery and examples of people’s experiences of hip fracture. These focus group participants felt that such information would have been very useful for them in their recovery, as they were keen to achieve a greater understanding of their condition, and that such a workbook would still be useful in addressing some of their outstanding issues.

Information for carers

Carers of hip fracture patients also identified their own specific information needs. One participant who cared for his wife described how he was not given any information about when she would be discharged from the community hospital, or to where, leaving him feeling let down and overlooked:

No one said a word to me like, I was sort of invisible like, you know, it was a funny situation like you are nothing.

Male carer, Gwynedd and Conwy

Another carer was distressed and concerned about her husband’s well-being when she discovered that he was to be discharged home with insufficient warning for her to make adequate preparations:

They never discussed it with us the girls, I was panicking then . . . I was in such a state I was getting upset all the time.

Female carer, Flintshire and Wrexham

These responses related to communication with the acute hospital teams. In comparison, some of the community occupational therapists discussed the importance of involving family carers in patients’ rehabilitation and how this can be beneficial in encouraging patients to continue with their exercise practice, suggesting that there is variation in carer involvement between different services:

It’s important to engage with family or carers . . . you know making sure that they are aware of the exercise programme.

Acute and community occupational therapist, Ysbyty Glan Clwyd

We you know, invite the family to be there when we are discussing the precautions [post-discharge guidelines given to hip replacement patients] so that they can understand their importance and reinforce it to the patient as well.

Occupational therapist, Wrexham Maelor

Service reliance on patient self-motivation

Some patients or their families had to persistently ask to access rehabilitation services, which they did not feel was their responsibility. They felt that such services should be offered automatically or arranged by health-care professionals without instigation from patients and carers:

I phoned them and asked them would it be possible, I came on a, I think it was an 8-week course then.

Female patient, Conwy and Denbighshire

I had to do all the ringing up, which seemed a bit crazy.

Female patient, Gwynedd and Conwy

Some participants reported receiving basic therapy input initially but were told by therapists that ‘we are only at the end of a phone’ (female carer, Flintshire and Wrexham) or ‘we won’t come again unless you ask us’ (female patient, Gwynedd and Conwy), leaving the onus on patients to instigate further input from these services. Although this usually applied to patients who were progressing well and who were happy to be more independent, patients differed in the extent to which they were willing to ask for help; some ‘felt like we were just a total nuisance’ (female carer, Flintshire and Wrexham) if they pursued further care.

Although some patients ‘haven’t got the nerve or the nouse to ring up and badger them’ (female patient, Gwynedd and Conwy), it was evident that patients who were told to contact the therapist or encouraged by outside sources to seek additional help were more likely to do so, and this helped them overcome the feeling that they were a burden. This was also identified as a positive aspect of the proposed intervention workbook, a draft version of which was shown to participants in later focus groups, who commented that it would ‘prompt you to ask things’ (female carer, Flintshire and Wrexham).

Professionals also acknowledged that in some cases it was up to patients to request input from therapists or other services and that they would receive this only if they made contact with the services themselves.

Patients who had good levels of activity and mobility pre fracture and who were younger often received less input, as clinicians would expect them to resume their activities in a more independent manner. These patients might be assessed to check safety and progress with exercises but not necessarily referred for many organised sessions (e.g. group physiotherapy or more frequent appointments at a physiotherapy gym). If they were provided with exercises to do, these patients would be expected to continue with minimal input from therapists, relying on their own self-motivation:

They are expected to do them, of their own accord if they can.

Community hospital physiotherapist, Ysbyty Gwynedd

It’s a lot about their own mentality.

Nurse orthopaedic ward manager, Ysbyty Gwynedd

This reliance on patients and their family members to be the driving force in rehabilitation could cause problems for those who do not have a sufficient support network, who are less self-motivated or who lack confidence to ask for help.

One occupational therapist also commented that seemingly independent patients might not do as well as expected without input and may take longer in their recovery than originally anticipated:

Couple of women recently and have taken ages, whereas initially talking to them they are women you know sort of retired but really active, do loads, but then they have fallen and really I think it’s more, you know the shock of the falling over and not being able to do things it does take them quite a long time to get over it.

Acute hospital occupational therapist, Ysbyty Gwynedd

Even in patients who were self-motivated, there was an acknowledgement that it was difficult to maintain motivation over time and that it was not a limitless reserve:

Getting hold of numbers is quite difficult yes. You have to be motivated don’t you and I think a lot of people aren’t motivated. Well they have had it knocked out of them by that time.

Female patient, Gwynedd and Conwy

Patient engagement in rehabilitation

Another potential barrier was the lack of engagement of some patients in the available exercise programmes. Professionals described how, for these patients, they had to ‘sit down and reason why it is important for them to do exercises’ (health-care professional, Ysbyty Glan Clwyd) and that at this point it was often helpful to include family carers to help encourage the patients.

Some patients commented that it was important that the exercises that they were given were relevant to their everyday activities, rather than being focused entirely on more abstract strength training, with comments such as ‘doing normal things in the house was more beneficial to me’ (male patient, Flintshire and Wrexham). Professionals agreed that setting functional goals that related to ADL was helpful for engaging patients in their rehabilitation. This provided the basis for methods used in enablement units, which some patients were referred to, in which patients ‘can see themselves actually doing something that is worthwhile for them’ (community occupational therapist, Ysbyty Gwynedd).

Other patients valued continued therapist input to maintain momentum, commenting that being left with pre-printed exercise sheets without the input of a therapist ‘didn’t benefit anything’ (male patient, Flintshire and Wrexham), particularly when they were experiencing pain, as this was a common barrier to exercise:

Seeing the physio[therapist], it’s a mixture of more exercises and going through it but also it’s the ability just to have someone to talk through things like what to do with the pain.

Male patient, Anglesey and Gwnyedd

She didn’t do the exercise because she was in pain so much.

Male carer, Gwynedd and Conwy

Participants also referred to a need for their rehabilitation to evolve and progress as they started to regain function, as this gave them a sense of achievement that helped in motivating them to continue:

There’s a limit to what you can do at home, I got to the stage where I needed equipment . . . the first time I went to the gym and saw the physio[therapist] there, I thought yes . . . It hurt, it was painful, but at least I felt I’m sure I’m going to get somewhere, and it has it’s been brilliant.

Female patient, Anglesey and Gwynedd

When participants were able to see the progress that they have made, either independently or with the input of health-care professionals, this led to greater self-efficacy, strengthening their own beliefs that they could manage further challenges as they moved forward.

Although many participants were keen to exercise and resume activities quickly, they identified that what was useful for some might be ‘totally different for certain people’ (male carer, Flintshire and Wrexham). Many patients felt that a more individualised approach to their rehabilitation would have been beneficial.

One participant had very strong views that patients should be given more time in a community hospital to recuperate rather than being engaged in physical rehabilitation, stating that:

. . . there should be somewhere, where people can erm . . . are allowed to get more time to recover, a person my age or whatever, can’t recover in a few days, they should be given more help somewhere or another.

Female patient, Conwy and Denbighshire

Comorbidities and pre-fracture function

Patients’ pre-existing levels of fitness and comorbidities prior to their fracture had a significant impact on their ability to recover and influenced their perceptions of rehabilitation and how they might engage with it. Patients who were previously very active may have found it easier to engage in a new exercise programme after fracture, as they were already aware of the benefits that exercise could have and how exercise had previously helped them to maintain function. One participant had previously suffered organophosphorus poisoning and spoke of how, before her fracture, she would ‘go swimming first thing in the morning, because that is the way I have got myself to walk again. And I need to do it to keep being able to walk’ (female patient, Gwynedd and Conwy); this had motivated her to do the same after her fracture, to rebuild her strength a second time.

In contrast to this, therapists commented that patients who were ‘poorly, sort of, post-op, with various different sort of comorbidities’ (occupational therapist, Wrexham Maelor), could develop a perception that they should stay in bed to recuperate and that this could have a negative impact on rehabilitation.

Previous levels of activity also had an effect on patient expectations and could lead to a sense of frustration at what was often perceived as a slow recovery. One participant described how he had previously walked a lot and that he felt very unhappy that he had not been able to regain this previous level of activity:

Now I feel badly done by because I am nowhere near, and I’m never going to be fit enough for that.

Male patient, Anglesey and Gwynedd

Other participants commented on the length of time that it took them to return to pre-fracture function and how they found this especially difficult to cope with. One patient said that it had ‘ruined my life’ (female patient, Flintshire and Wrexham) because she felt that she was unable to return to her previous level of function. Another patients stated that ‘It’s a year now and I thought I would have been better by now, you know’ (female patient, Gwynedd and Conwy).

This unrealistic expectation of recovery is linked to the patient need for information and, as previously outlined, may be mediated in situations in which there is input from a health-care professional who is able to manage these expectations.

Transport

Professionals highlighted transport as a major barrier to patients being able to access available services and a factor that they had to consider when referring patients to ongoing rehabilitation services. This was identified as an aspect of services that could be improved, by increasing the provision of transport to rehabilitation programmes run within the community:

We refer a lot [to falls group], as long as they can get transport.

Health-care professional, Ysbyty Glan Clwyd

The problem we have is transport for a lot of the over-70s because they don’t drive.

Community hospital physiotherapist, Ysbyty Gwynedd

Physiotherapists identified lack of transport as one of the reasons that patients may have declined further therapy input, even if they had been progressing well. This could lead to their progress stalling if they were able to access classes only that were below their ability level:

The big stumbling block then is the transport. We will occasionally keep people on for another session another 12 weeks, if they really have no means of transport but then they are then being limited by the level of exercise that everybody else is doing. Erm . . . so that is our biggest concern is getting people to places.

Clinical specialist physiotherapist, Wrexham Maelor

Problems with patients having access to transport also contributed to the variation in geographical service provision, as patients in rural areas may not have been able to access all services.

Communication between service departments

One participant who had experienced gaps in her care stated that this had happened as a result of the hospital losing her notes, leaving her with a poor impression of the hospital referral system and its general co-ordination of post-discharge rehabilitation. On a wider scale, there was a consensus that communication between different areas of the health service was the main problem, rather than the people who were delivering the services.

One example of a breakdown in communication was that of a patient who required a corrective boot following surgery, which she was told by the district nurses and community therapists that she should wear at all times, including overnight, which caused a lot of pain. It was only on the insistence of the patient’s family that she received an earlier follow-up appointment with the orthopaedic consultant, who was then able to clarify how the boot should be used and rectify her treatment plan:

Communication is not very good, because although they said they had rung about what they needed to do about me boot, what they had been told, was that it wasn’t to be taken off at all . . . [the consultant] said well, no it shouldn’t have been left on, you should have been having physiotherapy.

Female patient, Conwy and Denbighshire

The lack of co-ordination between departments was a common theme that undoubtedly contributed to the variation in care that patients received. There was an expectation on the part of patients that health-care professionals were able to ensure that the correct information was passed on to where it was needed, but there were barriers within the system that often prevented this from happening:

Communication was absolutely shocking.

Female carer, Flintshire and Wrexham

Despite patient perceptions that communication between service departments was poor, health-care professionals reported examples of good communication between acute services and community therapy services, and liaison with carer support workers, social workers and other peripheral services.

One therapist who was part of a community-based intermediate care team commented that her domiciliary care staff ‘have weekly meetings . . . that will be sort of inviting certain individuals in to support them if they were having problems, it’s linking that with sort of other colleagues . . . Support workers are really good at liaising with us’ (physiotherapist, Conwy intermediate care, Ysbyty Glan Clwyd).

Other health-care professionals commented that working in teams within the acute sector or in different community regions had a positive impact on communication as they ‘know what is going on around them, you know who to contact and they have the networks there’ (reablement team, Ysbyty Glan Clwyd). Working in close proximity with other members of a wider multidisciplinary team was seen to make it easier to communicate about a patient’s care:

Things seem to happen an awful lot quicker because it’s sort of, a head pops over a computer and says oh.

Health-care professional, Ysbyty Glan Clwyd

Health-care professionals also acknowledged that there could be problems liaising with authorities in patients’ home area if they did not live locally, which was common in North Wales because of tourism. The therapists described this as ‘challenging’ (occupational therapist, Ysbyty Glan Clwyd) because of the different systems that were in place in different areas; sometimes it was not possible to follow the usual procedures for these patients as health-care professionals were unable to order equipment or arrange travel in different areas. This could delay hospital discharge, delay the start of community rehabilitation and lead to further burdens being placed on family members, who might have to take responsibility for arranging care in their local area:

It’s the practicalities of then how that patient is getting back to their local area and hospital transport and funding arrangements, then that delays discharge quite a bit.

Occupational therapist, Ysbyty Glan Clwyd