Family Experiences of Vegetative and Minimally Conscious States

Exhaustion and frustration

Many of the people we spoke with described feeling utterly exhausted. The trauma of the original event had been followed by years of being on ‘red alert’, continually rushing to hospitals or care homes and facing extraordinary challenges both emotionally and practically. Dealing with red tape around their relative’s injury and every-day health and financial affairs could be very demanding. They talked of ‘drowning in paperwork’ and ‘fighting for care’. Families felt ‘thrown in the deep end’ with very little guidance or support. They also often felt they had had to fight for treatment – even for simple things such as making sure the patient has a properly adjusted wheelchair, as well as more complex challenges such as trying to make sure their relative was properly assessed and diagnosed (see section ‘Longer term care’).

When the injured person was an adult, with their own financial affairs, families were also confronted with practicalities of dealing with banks and utility companies – organisations that were not always responsive.
Even those who eventually obtained deputyship from the Court of Protection to manage their relative’s affairs reported that this did not always guaranteed swift cooperation from the relevant bodies. They also found the process of applying for a deputyship from the court challenging (though the process has been simplified more recently), and could find being ‘inspected’ intimidating.

Imogen vividly describes how she felt at the mercy of someone from the Court of Protection she experienced as having been sent to “inspect” her performance as a carer. Her story makes clear how vulnerable family members can feel in a system that gives no special rights to “next of kin” in making decisions for these patients. Even a “nice” inspector can cause significant anxiety and distress.
Dealing with the health service and any legal proceedings can also be slow and frustrating. 

Gunars describes the emotional toll of repeatedly having to chase documents and write everything down for legal proceedings. “I found it incredibly emotional”, he said, “Every note that I wrote to the family, every note that I wrote to the medical profession, every liaison with the legal people … ended up in tears. It was emotionally and mentally draining.” Gunars often felt that he and his partner, Margaret, were “banging our heads against a brick wall” and the frustration put a strain on him, and on their relationship. Margaret commented: “for us as a couple there were times when it became exceedingly difficult to just cope with the way we were each trying to deal with it”.

When an insurance company had assigned a liaison officer, families seemed to have extraordinarily good support compared to those who were trying to navigate the system on their own. Case managers could help for example, in finding an appropriate care home and understanding the healthcare system.
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The accounts families give of the practical challenges suggest:
  • there is further work to be done to ensure that all utility companies, banks, mobile phone companies and some government departments understand and are able to respond appropriately to families with a relative with severe acquired brain injuries.
  • it would be useful to encourage more people to choose who they would like to make decisions if they cannot by completing LPAs (Lasting Power of Attorney). An LPA can assign decision-making rights to another person – for Finance or for Health and Welfare in advance of losing capacity. Appointment of LPAs can pre-empt some of the problems faced by families after someone is injured. 
  • it is important to let people know that Court of Protection forms are now (since 2013) much easier to fill in so that they are not put off doing so.
  • it is important that inspections for LPAs/deputies are rigorous but supportive to offer help and guidance alongside appropriate scrutiny.
  • Most families are thrown in ‘at the deep end’ – into an extraordinarily challenging situation - case managers assigned to liaise with the family are very valuable. It would be useful to extend this service to families who do not have an insurance claim.

Last reviewed December 2017.


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