ATHENE:

What matters to this participant?

Bonnie is very appreciative of her daughter Carol – she says she “couldn’t wish for a better daughter.” She likes going out with her (in the wheelchair) to the local shops and sometimes to the hairdressers, though on another occasion she says she is happy not going out because it is a lot of effort. She is sad that so many of her old friends from the local estate have died.

Bonnie hates taking all the tablets. She is extremely fond of her cigarettes. Carol tries to regulate how many cigarettes her mother smokes. She has realised that over 25 cigarettes per day causes breathing difficulties for Bonnie so she brings 12 cigarettes in the morning and 12 in the afternoon. Carol says that if she brought 40 cigarettes Bonnie would smoke them all by lunchtime.

There are photos of a neighbour’s dog in the lounge. Bonnie says she could not have a dog herself because she might fall over it and she would be unable to walk it. She loves the neighbour’s dog and has him in most afternoons (she is friends with his owner).

Bonnie spends most of her day watching TV or listening to the radio. She likes quiz shows. She doesn’t go to a day centre. She doesn’t want to go. “I feel they’re not for me – how can I put it, they do a lot of the old [fashioned] things.”

She talks very positively about her telehealth equipment. “There’s not many people got this machine. It’s quite good and helpful.” She says this is because it tells her how things are. It provides reassurance, especially since “if anything’s wrong they ring you back.” That hasn’t happened very often, she says.

Bonnie and Carol, told the researcher a very sad story about her time in the residential home at the back of Bonnie’s bungalow. Carol wanted to bring her mother closer to her and arranged for her to be transferred from the residential home she was in in Scotland to one nearby (approximately 2 years ago). This is the area Bonnie had lived in for many years and where she brought up her children. Carol visited the home regularly and the manager offered her a job there as the housekeeper. She took the job but soon found that the care was very poor indeed, residents were not fed properly, medications missed and residents were treated very badly by some of the staff.

Bonnie was badly hurt by one of the staff members of the residential home. He grasped her wrist and the watch she was wearing tore a hole in her skin. The scar is still visible. Another lady in the home, aged 98 and with dementia, had her arm broken by the same member of staff. Carol complained but the staff member was not asked to leave. She contacted the council safeguarding staff who visited the home but they were told by the manager that Bonnie and her family didn’t want to speak to them, which they say was untrue. CQC were regular visitors but the care didn’t improve. Bonnie’s cut was deemed a minor cut by the home managers and the safeguarding officers. Carol alerted the police who said the incident would be classed as Actual Bodily Harm. Carol asked the council to give her mother a bungalow nearby or she would ask the police to prosecute them. Bonnie moved into the bungalow with nothing but the clothes she stood up in.

Bonnie says she would never have carers from a private company after her experience in the residential home.

Technologies in participant's home and life

Bonnie’s home is fitted with both telehealth and telecare equipment as well as a range of conventional appliances. In terms of telehealth, she has an oximeter, thermometer, weighing scales and a blood pressure monitor. The telehealth control box sits on top of the gas fire (which is never lit as the room is warm enough from the central heating).

For telecare, Bonnie has an electronic key box (to allow paramedics or police to get in in an emergency), a smoke alarm, an electric door opener (which she finds useful but she would like to see who the caller is before letting them in). She also has a pendant alarm which she keeps by her bed. She does not usually wear it during the day, only when she feels unwell.

Bonnie has a large button telephone but there are no numbers programmed in. She does not know Carol’s mobile number. She has a tray trolley and a walking frame with a netting bag on it – she uses the latter for carrying Cornettos into the lounge because they’re too cold to carry in her hand. She also has a wheelchair and an electrically operated arm chair and bed (both bought by Carol), a bath seat and toilet frame. Bonnie has a microwave but not a cooker , but Carol cooks meals and brings them round for her to microwave.

Materiality and capability

Bonnie’s multiple health problems, especially the weak heart and chest, make her very tired and reduce her ability to move around. When first visited, she is in sitting in her armchair in her pyjamas. She goes to bed about 7 pm – or earlier if she’s tired. She says she used to have a snooze in the afternoon but it was stopping her sleeping at night.

Because of Bonnie’s limited energy, Carol tries to make things as easy as possible for her. For example, every morning, she prepares her mother’s lunch and leaves it ready for her to microwave. She leaves the food actually in the microwave with the correct settings all pre-set, so that all Bonnie has to do is close the door. This is usually soup or a bowl of rice pudding. She always makes Bonnie a drink (hot chocolate) before she leaves every day, so Bonnie doesn’t have to make her own.

In reality, Bonnie needs Carol to do most of the ‘self-management’ tasks and operate the telehealth equipment, as the following extract from field notes illustrates:

At 10 am a voice comes from the telehealth monitor “Please take your daily measurements”. This is Carol’s cue to do the morning routine of medications and monitoring, not just the telehealth monitoring.

Then the data are transferred; during this, the phone rings. Carol tells her mother not to answer the phone because it will disrupt the transmission.

Whilst Bonnie needs help taking and sending the readings, she appears to understand the values. On one occasion she knew her blood pressure readings were high and wondered why the monitoring centre had not phoned back yet to tell her they were high.

Carol was instructed by the engineer who fitted the equipment on how to use it. After that she worked out how do it herself. She recounts the story of trying the equipment herself when it was new just to see what her own measurements were – she didn’t realise it had been set for her mother’s measurements. So she got a call from the monitoring centre querying the results!

Carol has a very good intuitive knowledge of the telehealth equipment, as this extract from field notes shows:

“Oximeter doesn’t seem to be working, Carol says they had the same problem yesterday. Eventually it starts to work. Carol looks again she thinks it doesn’t look right ‘That can’t be right.’ Carol says she knows by the readings whether its working or not.”

Carol and Bonnie say the telehealth equipment has stopped a lot of visits to A&E and hospital admissions. Before they had the equipment, Bonnie ended up in hospital about once a fortnight, mainly because she tended to panic about not being able to breathe. Now that Carol can show her that the blood oxygen is OK, she calms down.

Carol is frustrated with the social care system. She recounts an incident when the hospital didn’t inform her that they were sending her mother home and she hadn’t put the heating on or bought any food in. Carol got a call from the paramedic bringing her home to say her mother was on the doorstep. She was furious and wonders what would have happened to her mother if she hadn’t been around at the time.

Carol says the police have her telephone number because Bonnie sometimes rings the police when she’s hallucinating due to the medication and thinks there’s a burglar. So the police always phone Carol first. Recently she had to go and check on Bonnie at 2.30 am.

Bonnie recalls that she fell and broke her arm 3 days after she had been discharged from hospital. The hospital had discharged her with a zimmer with wheels on and Carol and Bonnie told them that she had never had one before, she was used to a zimmer without wheels The staff insisted it would be easier with her having had a stroke. Bonnie lifted it instead of pushing it and the wheels went over. They had provided practice sessions at the hospital but Carol says that’s not your own house.

Real incidents of using (or choosing not to use) ALTs

Bonnie tells the researcher that yesterday (Sunday) her pulse rate was high, 102, so the community monitoring service rang Carol and Bonnie. Carol says they must have a marker that triggers them to ring. The parameter for Bonnie is 100. Carol agreed to do it again at lunch time/ It was 106 and they contacted the out-of-hours GP service, and a doctor rang back and told her to take the nebuliser. Her oxygen level was low. The doctor said to leave it for half an hour and take another reading, so she did and it was better then. Bonnie didn’t feel any different all through this.

Carol says this is why she likes the telehealth equipment. “This is how important these machines are because if it had gone higher he would have started her on an antibiotic and prednisolone. And this stops you going to hospital then doesn’t it?”. Carol has instructions to start the antibiotics and prednisolone if she thinks her mother’s stating with an infection, and then ring the GP the next morning and tell him what she has done. The GP is apparently linked in with the telehealth system, and “if he gets link from anywhere he will ring and check.”

Carol says that Bonnie is supposed to use her nebuliser regularly but for some reason she doesn’t (she only uses it when she feels short of breath), so the telehealth system is a way of detecting that she needs to take the nebuliser urgently.

Comment

This case illustrates a number of themes that are also found in other cases in our series. Bonnie has multiple interacting medical conditions, each of which affect her ability to manage the others. She also appears to have low health literacy and follows an unhealthy lifestyle – consuming large quantities of sugary foods and smoking very heavily despite her COPD.

People are very important to Bonnie, and she is fortunate to have close and regular contact with people (and one animal) that she likes and trusts. Importantly, this makes her limited life worth living. Bonnie’s devoted daughter Carol is a skilled ‘bricoleur’, applying her intimate knowledge of Bonnie’s desires, needs and physical limitations to obtain and/or adapt technologies to make maximum use of Bonnie’s remaining capacity.

Bonnie is very positive about the telehealth and telecare technologies. Despite some technical glitches, the technologies do appear to have reduced her repeated hospital admissions and outpatient visits. But the technical equipment does not stand alone. Rather, it exists in a network of people and organisations that includes her GP, the district nurse, the COPD and diabetes outreach nurses, Gina and other staff at the monitoring centre, and – most importantly perhaps – her daughter Carol. Arguably, without the human agents in the network, the technology would not ‘work’ at all.

A disturbing theme in this case is alleged abuse of the elderly and chronically sick individual by the staff who are paid to care for them. If confirmed, these accounts are very disturbing and – apart from the ethical and system issues which they raise – contrast markedly with the empathetic and engaged interactions that occur with trusted staff and family members. The question must be asked, how far should research into advanced assistive technologies be prioritised when such basic aspects of staff behaviour may be going unaddressed?