Look back in anger

Case notes

Practitioner: Anita Alexander, project development worker, Good Neighbours Home Support (GNHS). 

Field: Home support.  LOCATION: Fife, Scotland.  CLIENTS: Moira and Gary Gemmill are a married couple in their forties.  

Case history: In March 2002 Moira was referred to the GNHS – run by the Women’s Royal Voluntary Service – by Fife’s integrated response team. Moira, who had no previous ill health, had gone to work as usual one morning. However, she felt unwell and decided to leave. On her way home she suffered a massive brain haemorrhage. Gary arrived at the hospital to be told that it was unlikely that Moira would live. The couple had been devoted to each other at the expense of everything else: their relationship was virtually all both of them had. Gary was devastated. However, Moira did survive although she spent a long time in intensive care. On referral to GNHS Moira had poor mobility, little speech and stroke-affected right eye and hand. She also put on a lot of weight as she could not get about. 

Dilemma: While Moira’s physical health care was being expertly provided, Gary’s  needs were being overlooked. 

Risk factor: Gary’s frustration and anger might cause his health to deteriorate and result in Moira being taken into care. 

Outcome: With GNHS Gary is better able to manage and Moira continues to make progress towards greater independence.

Formed in 1938 in the shadow of war, the Women’s Royal Voluntary Service (WRVS) has an image that for many sits uncomfortably with the fractured, gritty nature of social work. And yet, as well as providing essential meals-on-wheels services, WRVS emergency services teams, for example, were at the Potters Bar rail crash supporting victims and the emergency services rescue teams.

In Fife, Scotland, the WRVS runs Good Neighbours Home Support (GNHS), a project that shows the true value of voluntary support. GNHS works with referred clients – mostly older people – providing intensive short-term home support. However, it also works with more long-term cases – one of whom is Moira Gemmill. Not yet 50, Moira is the project’s youngest referral.

Following a sudden, traumatic brain haemorrhage Moira was rushed to hospital. On arrival, her husband Gary feared the worst: “It was a shock to my wife and myself – even more so myself because I thought I’d lost her. She was in a coma for 10 days and it was pretty much touch and go,” he says.

“Having seen his perky wife going out to work in the morning he was now looking at someone in a hospital bed that doctors did not expect to survive,” adds Anita Alexander, project co-ordinator, GNHS, who would become involved with the Gemmills.

Clearly rocked by the incident, Gary’s anger intensified with his perceived isolation following Moira’s discharge from hospital: “It was out the door with her. That’s it. We were dumped out of the hospital and into the lap of the gods, more or less. I was shouting down the phone at any Tom, Dick or Harry who would listen. I was shouting but wasn’t getting anywhere,” he says, his voice breaking. “They couldn’t care less for us.”

Somebody then suggested the WRVS. “They lifted the load I was having to carry myself,” says Gary. “I’ve been in the forces and I thought I was a tough guy but this really brings it home to you. My father had cerebral thrombosis when I was young – and I think that put me in good stead for caring for Moira.”

Alexander recalls: “We were asked to provide Moira with companionship, to encourage her mobility, speech and independence, and help with her memory loss by taking her to places that she used to visit.” She adds: “On my first visit it was clear that Moira was very accepting of her condition – her memory loss meant she didn’t know that she had been anything different. She was very withdrawn – would pull away when you sat down next to her, had no eye contact and limited speech.

“Gary was a different kettle of fish. He was angry, frightened and confused. He had taken his anger out on everybody. He had fallen out with everyone at the hospital – from the top consultant to the ward cleaner. He had barked and everyone had backed off. They were doing all they could to help Moira but they were not providing any extras that might help Gary; there was no support or counselling. All care focused around Moira’s medical needs. I don’t think anybody said to Gary, ‘How are you?’ Or if they had he had barked so loudly at them that they never asked again. Most of it was fear, grieving for his wife and the awfulness of it all. None of us at WRVS are psychologists, psychiatrists or counsellors but we do have life skills, time and experience and we could pick up on what was going on. So, instead of just focusing on Moira we were going to support Gary as well.”

Volunteers went in two days a week and spent a couple of hours taking Moira out encouraging her to talk and walk. “For those two days a week Gary started working better because he knew that she was OK. We were helping both of them,” says Alexander.

Over 18 months Moira has progressed well. She walked with a frame to begin with, and then a stick but now manages alone. “Recently in town Moira saw her brother and said to the volunteer, ‘That’s my brother’. And he came over and said how great it was to have her up and about again and said to Moira, ‘Don’t worry, we’ll soon have the real Moira back’. And Moira smiled and said, ‘This is the real me’. We can’t take the credit for every improvement but I know the volunteers and WRVS staff have done a sterling professional and caring job with her,” says Alexander.

Gary agrees: “Without the WRVS Moira would be on her own now. I think if I had to cope on my own I’d have gone under by now. I really do.”

Arguments for risk

• Moira and Gary were clearly devoted to each other – and needed each other to survive. However, Gary was being crushed under the pressure and worry of looking after her – but with home support he was able to be more relaxed and able to manage both his job and his wife’s care. It seemed that his aggressive attitude counted against him. He admitted that he “rattled a few cages”, and while nobody deserves to be verbally abused, WRVS staff saw that the underlying cause of this was Gary’s overwhelming frustration and fear. His life had been turned upside down.  
• Moira has had blocks of speech therapy, physiotherapy and occupational therapy but not every day. The constant has been the volunteers going in twice a week. 
• Importantly, the volunteers are aware that they must do things with Moira not for her. “It’s about pushing and helping her gain independence. It’s not about her becoming dependent on volunteers,” says Alexander.   

Arguments against risk 

• The injury sustained by Moira was traumatic and complex. It could be argued that she needed specialist care provided by trained and skilled workers, but this was entrusted to volunteers with an organisation that had little, if any, experience of this type of service user.  
• The Gemmills lived in a first floor flat and because of Moira’s initial mobility difficulties she would have been unable to manage stairs and would thus be trapped in her flat. This would increase her isolation and anxiety while Gary was at work.  
• Moira’s memory loss and lapses could mean that she is a danger to herself and others as she might use and then forget what to do with potentially dangerous electrical appliances.  
• Given this Gary was understandably worried about leaving his wife alone and this greatly affected his ability to work effectively. As the sole breadwinner he could not afford to lose his job.

Independent comment 

Moira and Gary’s situation highlights the current deficits in the statutory provision of care, and the advantages of the voluntary sector, writes Simon Heng. Health and social care has, traditionally, been restricted to meeting the physical needs of its clients. Virtually all practitioners would agree that the emotional consequences of acquiring a disability are enormous for both the individuals themselves and their families. And, as this case highlights all too well, paying attention to the emotional needs of clients and their carers can be just as important in their eventual success as the provision of physical care and equipment.  

However, most help given to enable people to adjust to their new situation has been ad-hoc. For example, in the West Midlands, there is only one counsellor in post offering a service to people adjusting to life with disability.  

It also seems that the statutory services can only offer professional help in the home in the short term. The advantage of voluntary service provision is that it can be flexible and responsive to its clients needs, and may be on offer for a longer period of time. The key to success for this couple has been the day-to-day support they have received over 18 months.  

There is a risk with voluntary sector organisations that there may not be the expertise in training or supervision to provide this kind of help in an appropriate way. Although this particular intervention has had a successful outcome, due to the sensitivity of the GNHS caseworker, in other hands it might equally have failed.  Simon Heng is a disabled service user