Coming here helps overcome isolation
Headway North Lanarkshire has been meeting weekly at Wishaw Volunteer Centre, Main Street, for a decade.
It is a therapeutic peer support group for anyone in North Lanarkshire who has suffered an acquired brain injury – any type of brain injury which has happened since birth.
The group also welcomes anyone caring for a family member, relative or friend who has a brain injury to go along and share their experiences or take some time out from their caring responsibilities.
As network support coordinator for West of Scotland Gaille Gray explains, for some members the meeting is the only place they can come where they do not have to explain if they are not having a good day.
Here, Gaille explains the group’s work in Wishaw...
“Here, no-one will say: ‘What is wrong with you?’ Coming here helps them overcome isolation, which is a massive issue for someone with a brain injury. Brain injury is often a hidden disability, making it hard for others to understand. They look like there is nothing wrong with them. But when having a conversation, a person with a brain injury will lose the thread. They might say the wrong thing or just not answer. It can become quite embarrassing or off-putting.
“Short- term memory loss can be quite common. We have a member, for example, who comes regularly and can be quite sporadic. If he doesn’t appear, we will go out and quite often find him wandering around outside because he is not sure why he is here or where he is going. We get to know their personal difficulties and struggles.
“They are individuals and a brain injury affects everybody differently. Some experience huge personality changes. People who were placid before can become quite aggressive and irritable. Some of them can have challenging behaviour and can be quite aggressive and frustrated and carers bear the brunt of that. Carers are heavily involved here and we wouldn’t function without them. For them, these groups are lifelines.
“A brain injury directly affects the whole family and people can be thrust into the role of carer without any prior warning. This can be a frightening and bewildering time for many carers and the opportunity to talk with other carers about the pressures and problems is invaluable.
“Brain injury services in the West of Scotland are not great and people should be aware of that. If you get good rehab, outcomes will be better. Some of our regular members come from Murdostoun Castle. Some people with a brain injury are dischanged home from hospital without rehab and that is something we need to work hard to change. There should be a better pathway.
“Trying to speak to families at that very distressing time can be difficult. I tell them even if it is something they consider silly or trivial, phone me.
“No-one can forecast that this will land at your door. Women in particular think they should know about brain injury and be able to deal with it. When they go home after hospital visiting hour and they have peace and quiet, that is when questions and issues arise and I am on the end of a phone.
“B ra i n i n ju r y is so misunderstood. People say a person looks alright, but you cannot see how much harder the brain is having to work to do simple, everyday things.
“Headway helps with a whole range of things, including benefits. Most of these people worked all their lives up until the point of their brain injury and have employment history but the benefits system does not take that into account. We have one member who goes to the Job Centre to sign on and when he gets there, asks them: ‘Why am I here?’ and staff don’t know how to deal with that. Many of these people would love to be able to go back to work and that is the real unfairness of it all.
“When they accept their limitations, they move on. What works best in this group is the peer support and the humour. When you leave here your sides are splitting. They support each other without really knowing it.
“When it comes to funding, the outcomes here are seen as soft outcomes and those who make the decisions do not realise the implications this has on members’ mental health and wellbeing. For a while, we could offer therapeutic massage for members and a bit of pampering for carers, but that service has been cut.
“It should be acknowledged that this kind of thing – a bit of respite and support – is what keeps carers caring. The value of carers is not acknowledged. It is money in the bank, they save the country an absolute fortune.
“We used to get a grant of £ 2000, but that’s been cut to £1200 and that all goes on paying for the let of the hall.
*Headway North Lanarkshire meets every Thursday between noon and 3pm in Wishaw Volunteer Centre’s Church Building, Kenilworth Avenue, Wishaw.
For more information, including how to volunteer, contact Gaille Gray on 07795 551232.