News

CASE NOTES:

Gill Grinham, social worker. 

FIELD: Brain injuries. 

LOCATION: Herefordshire. 

CLIENT: Ray Giddings, a single man who had always lived with his parents. 

CASE HISTORY: Twenty-five years ago, when he was 24, Giddings had a sub-arachnoid haemorrhage - a sudden leak of blood over the surface of the brain. At that time his lifestyle revolved around drink and drugs, mostly cannabis. Just over 10 years ago, he fell down some stairs while drunk, further damaging his brain and leaving a severe scar across his head and face. He also has a left-sided hemiplegia (a fixed physical disability), so he can't use his left arm, and a weakness in his leg causes mobility problems: he walks unsteadily, drags his foot and uses a stick. Four years ago Grinham was allocated the case to see if Giddings could be moved to some form of living independently of his ageing parents. 

DILEMMA: While Giddings achieves more independence by moving into the community, this will inevitably need to be compromised to ensure his safety and that of others. 

RISK FACTOR: Not only do his cognitive impairments and potential access to alcohol and drugs create risks to his health, he may be at risk of social exclusion or violence because of his lack of inhibition and respect for personal space. 

OUTCOME: With permanent one-to-one care Giddings' quality of life is improving in the community and he is slowly becoming more independent.

Ray Giddings, a qualified science teacher, was 24 and had his life in front of him. Outside work his social life centred on going to the pub and smoking cannabis. And then he suffered, without warning, a sub-arachnoid haemorrhage - a sudden leak of blood over the surface of the brain. It is a condition that affects about 8,500 people in the UK each year. And the life that Giddings knew was suddenly behind him.

As well as a left-sided paralysis, he has memory problems and a lack of insight, and remains in denial about his condition. For the next 25 years he lived with and was cared for by his parents. However, for the past four years brain injuries specialist social worker Gill Grinham has been working with Giddings to try to transform his life again.

"He lived in a rural area with his ageing parents," says Grinham. "He had no quality of life apart from some day care. He was desperate to move away. In turn, his parents understood Ray ought to leave, although his mother had many issues in letting go of him. It took me three years to separate them."

About 18 months ago, after a lot of assessment and research, scrapping for funding and convincing people that Giddings had the problems he has, Grinham managed to secure a flat, with a 24-hour care package supplied by a private agency. "He has one-to-one care throughout the day and night. He needs supervision, encouragement and prompting for his personal care," she says.

However, the risks for Giddings living in the community revolve around his love of drink and drugs. "It was a significant time for Ray to have a brain injury," says Grinham. "He still thinks of himself as having that student-type lifestyle."

On one occasion a carer found Giddings with some cannabis, which his friend at the day service had given him, and said he wanted help to smoke it. Following a vulnerable adults conference, a policeman and Grinham met Giddings. Grinham says: "We explained to Ray that cannabis was still illegal and I explained, with my head injury expertise, that drugs could cause him a lot of damage, and that he also put the carer and agency in a difficult position."

However, this incident highlighted a dilemma. "Some people might say that he has a right to choose how he spends his own money and lives his life in his own home, and that I had no right to intervene. So if he instructs his carer to roll a joint they should do it.

"But if he is permitted to smoke cannabis, it could cause further damage to his brain. He has a very low tolerance to drugs and alcohol - and he has no insight. He may smoke a joint and forget that he had it and then smoke another and so on."

Giddings had agreed he should not smoke cannabis. Grinham says: "By smoking or trying to smoke, he is not being non-compliant, he's just being forgetful. So I have a duty to protect him."

There are similar potential problems with alcohol. "If he goes to the pub, do the carers have a right to stop him drinking?" Grinham says. "Also, he wants to chat up women but, because of his injuries, he has what is called 'disinhibition' and does not recognise cultural constraints such as personal space. This is fine if the person understands his condition but otherwise he might just come across as a bit of a pervert.

"Ray is very plausible when you meet and speak to him. You wouldn't think he has any mental difficulties at all. The word we use in our work is that he 'confabulates'. He is a bright guy and he's skilled in covering up any problem area."

Now that Giddings is settled in his own flat, Grinham wants more independence for him, albeit within tight parameters. "We talked about getting Ray to join a choir - he used to sing in a choir in London. The carers said he couldn't go because he goes to a club run by Headway - the brain injury association. Ray was worried about getting into trouble or not being able to afford it. But with his mother's help I insisted and he joined. And he loves it."

The battle for Grinham now is to stop carers imposing care on Giddings - and to get him to do more for himself. "He has the potential to do things but will always need 24-hour care. But it's brilliant to see him now."

Arguments for Risk 

• Giddings wanted to move into his own place and his parents, despite their misgivings, knew that it was for the best if the support was right.
• The alternative option of long-term specialised residential care was prohibitively expensive for social services and may not even provide the care needed. Giddings did have some respite at an expensive specialist residential unit but Grinham found that some of the staff weren't very skilled or experienced in head injuries, nor did they promote independence. "They didn't even want him to have a door key," she says.
• With one agency providing the care, Giddings now has four or five carers who know him well.

Staying at home with his parents was not an option. "They were getting old and were being worn down and were aware that they were preventing him from having the lifestyle he needed but, nonetheless, struggled to let go of him," says Grinham.

Arguments against risk 

• Giddings needs constant supervision even when he is on his own in his own house. This brings concerns about his interaction with his community. It seems inevitable that at some time he will find himself unsupervised or supervised by an inexperienced carer, which could lead him into very difficult and risky situations.
• His motivation for socialising is based on cannabis and alcohol - this is why he wants to go out. Given his plausibility, it will surely only be a matter of time before a carer believes that one drink or one joint won't hurt him. But his brain injuries worsened following a fall while drunk - a state which, given his intolerance to alcohol, doesn't take too many drinks to achieve - and he has mobility difficulties too.
• With his cognitive impairment (lack of perception, reasoning, memory, ability to make judgements, and so on), Giddings will not be able to make use of direct payments, for example, and truly be independent.

Independent Comment   

Acquired brain injuries (ABI) affect more than a million people a year in Britain, writes Mike Hope. Without specialist neuro-behavioural rehabilitation (almost unheard of 25 years ago) people like Ray Giddings find life almost impossible, while community services are scarce and difficult to access. There are no specific pathways for people with ABI.  In Ray's case, progress has been made. He has broken away from his parents and is living in the community supported by carers. The point is, what do the carers do with him? People with ABIliving in the community don't need carers who come in to do things for them, they need support workers with some ABI training who know they have to encourage, stimulate, prompt and supervise: all underpinned by risk assessments. Brain injury survivors who have made substantial recoveries remark on the importance of being allowed to take chances by staff, rather than being stifled by well-meaning caution.  Joining the choir has reconnected Ray with other, more positive interests. He can now be judged by how well he sings rather than his behaviour. It is a huge leap back into the real world.   He is fortunate to live in Herefordshire, with its specialist brain injury service. In other areas, people have to get by with non-specific services that fail to understand their needs. Headway (www.headway.org.uk) is an important advocate here, and practitioners in need of advice should contact the Brain Injury Social Work Group (www.biswg.co.uk).  Mike Hope is ABI co-ordinator for East Sussex and Brighton & Hove.