Pioneering research has revealed that a radical new approach is needed to get the best for veterans and their families who are trying to cope with the wide-ranging impacts of limb loss.

Findings from the Blesma Families Project, which were presented at the annual Members’ Weekend in June, have identified the need for significant changes in the way support is given to both Members and their family carers.

“The health and wellbeing of the carer is crucial to the health and wellbeing of the veteran with limb loss, but too little attention has been paid to their needs  until now,” said Hilary Engward, senior research fellow at Anglia Ruskin University’s Veterans and Families Institute for Military Social Studies, which conducted the 18-month-long project.

The study interviewed and surveyed 72 people – Blesma Members and their families – to get a unique insight into how families live with limb loss.

“We wanted to increase the understanding of how people care in a family unit, particularly by looking at the people who are actually doing the caring,” added Hilary. The findings have been published in a report entitled Caring and Coping: The Family Perspective on Living with Limb Loss, and will feed into Blesma’s working practices for BSOs. A Living With Limb Loss Support Model will also enable both civilian and military services to provide better support to families dealing with limb loss.

Hilary Engward, senior research fellow at Anglia Ruskin University’s Veterans and Families Institute for Military Social Studies

Key recommendations

• The work involved in caring within the family unit is acknowledged as essential in maintaining independence for the Person Living with Limb Loss.
• The person living with limb loss and the carer will experience different levels of coping to each other and should be assessed separately
• Each key stage and its’ specific requirements for partners and family members in the limb loss life course is identified in accordance with the needs of the Person Living with Limb Loss and carer.
• Health care professionals gain better understanding of how being in the military may shape an attitude of not admitting pain and demonstrating weakness.
• The status of the veteran and the obligations set out in the armed forces covenant be disseminated across health care professionals’ training and continuing professional development.

The nature of current care systems 

“The physical demands of caring for someone are important to understand, but the vast range of tasks that are involved on a daily basis are not recognised,” said Hilary. “It is often the little things that make  a huge difference to a veteran’s experience. In the research interviews, people referred to them as ‘the little things that we had to find out for ourselves’. That could mean making a cup of tea in the kitchen and not being able to carry it back into the lounge, finding that your socks are out of reach, or wanting to contribute to household chores but not being able to reach a tea towel or dishcloth to help.” 

In and of themselves, these are small things but, says Hilary, they create frustration for the veteran and, as  a result, for the carer. “Families don’t feel they can talk about this type of issue because it seems mundane, so the ability to adapt to a new way of living is crucial, especially in the early stages when the veteran returns home from professional care. Unfortunately, people often only find this out as they go along.”

As a result of the research findings, Hilary believes that more structured advice and guidance about these small things early on could make the process easier  to cope with for veterans and their families. “It would be simple advice but it all adds up,” said Hilary. “Being able to help with the washing up helps bring back life pre-limb loss, for example, and socks can be left within reach, so finding them doesn’t become troublesome.”

The need for honesty

The research, funded by the Forces in Mind Trust, found that respondents want greater honesty and straight talking about the impact of limb loss and the different ways of coping with it. “They wanted to be allowed to feel angry, frustrated and upset at times,” said Hilary. “Family carers often feel they can’t say anything. They may even feel anger towards  a partner because of the limb loss but cannot express  it because that would be seen as being nasty. Yet, these emotions are natural when faced with a sudden, devastating change, and they should be discussed.”

Don't forget the emotional impact

“Family carers say things like; ‘I should be strong as they are the ones who have had the trauma’. However, the reality is that we are human and we need space to say we are angry,” says Hilary. “One of the things that came from the research is that no-one asks families how they manage that aspect of limb loss because  the focus is on the physical and medicalised aspects. They are told what to expect in relation to coping with the physical aspects of limb loss but are told very little when it comes to the emotional aspects.”

Pain, and how to deal with it

Many of the participants spoke about having Phantom Limb Pain but not admitting the extent of the pain or asking for help. This impacts on the caring family who feel helpless because they see the individual in pain  but feel as though they can’t do anything to help.

“Families told us that Phantom Limb Pain is not widely understood and is often treated in a trial-anderror approach by health professionals,” said Hilary

“As a result of this feedback, Blesma is developing information about pain and pain management, and because pain and how to deal with it, were two of  the big features that came out of our research, we  are planning a new project to find out how veterans understand, and deal with, pain.”

The carer's health is vital

When it comes to staying healthy, the main focus  is perhaps obviously on the veteran. However, the  carer could also be suffering from health conditions  but might be so busy caring for their loved one that they neglect to look after themselves.

“Participants told our researchers that the military way of not admitting to needing support is family wide,” said Hilary. “Their attitude is; ‘We are from a military family, so we get on with it’. However, if the main carer’s health worsens, it will have a pronounced impact on the veteran’s wellbeing. No-one is taking the carer aside and asking how they are doing or making sure they get to their own doctors’ appointments and check-ups. We need to improve this aspect of care as  its impact can be very serious for everyone involved.”

There is an overwhelming need to realise that both the person with the limb loss and their carer will cope differently. “We often assume that, if the veteran is doing well then so is the carer, but it is not always that straight-forward,” said Hilary. “Everyone focuses on  the veteran’s health and wellbeing while their main family carer may be thinking; ‘How will I manage?  Can I do this?’  There is often a different reality and  set of unknowns back home that go unnoticed.

Realistic goal setting

Not every amputee is young, fit and able to take part  in exciting activities. Many people need more sedate goals to aspire to, and even though these smaller goals are important they are often not recognised or planned for. The goals could be to return to activities that were part of everyday life pre-limb loss – such as gardening, painting and fishing – for both the veteran AND their main family carer. A poignant example from the research was one veteran’s goal to walk along the beach holding hands with his wife. 

“These goals need to be realistic in relation to one’s health so it is about working out how to do those things for both the carer and the veteran,” said Hilary.

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