New Petitions

I represent the Brain Injury Awareness Campaign—also known as BrainIAC—which is a group of people who have acquired brain injury and their carers. It is because of our experience of the services and the gaps in services that we have come together to ensure that future services are more effective.From personal experience of having acquired brain injury, I know that ABI does not have a cure. The brain cannot rebuild itself, so ABI affects people for life. That means that people need the support of services over a long period or even for life. ABI does not discriminate; it affects people from all walks of life and affects each person differently. Some people are left with profound physical disabilities, some with cognitive thinking problems and some with emotional problems. The majority of people feel isolated. People usually have a mixture of those problems. The brain controls everything, so the effects can be anything.ABI also has an effect on the social side of people's lives. It leaves people unemployed, vulnerable to abuse and isolated from society. It affects the family and friends of the person and it also affects the society in which we live.It seems that, when it comes to funding sources, the buck is being passed between learning disability, physical disability and mental health. ABI is separate from all those and needs to be funded separately. We believe that if the funding were separate, local planners would be more able to set up suitable services in their areas.The services are patchy and piecemeal across Scotland. If someone does not live in the right place, they might find it difficult to get access to appropriate support. I ask whether, if one of you or one of your family had ABI, you would like them to be treated like that. We believe that the outcome of change would be more than just an improvement for the individuals or in the services being funded. If people had the proper support, that would reduce the number of people who are on medication for depression, who commit suicide or feel suicidal, who are assaulted, who abuse alcohol and drugs, who are stuck in hospital long-term or who are in prison. There would also be a positive effect on society overall.It is more than interesting to note that, 10 years ago, Sam Galbraith, who was then responsible for health in the Scottish Office, agreed to have community care planning guidance changed to recognise ABI as a separate group. However, that does not seem to have been followed through.I am speaking to you today because you have the power to change the way in which acquired brain injury services are funded and planned. We know that things will not change automatically, but we think that the ideas outlined in the petition will make a positive start. We ask you to introduce a separate and distinct health and community care client category of acquired brain injury.Thanks for listening. With me are Mark Ziervogel, who is a carer, and Christine Flannery, who is from the managed clinical network for ABI. We would be pleased to answer your questions.

I am the manager of that network; I am not a member of BrainIAC. The network does not campaign, but I recently fell over Helen Moran and her group in my work.The Scottish acquired brain injury managed clinical network, which is basically a way of working—it is not a department or a service—came about because it was thought that better co-ordination and integration of services were needed and that attempts to get services in place should be made if they did not exist. We are considering traumatic brain injury as the first step simply because the subject is so big to tackle. Traumatic brain injuries are one reason—indeed, they are the biggest reason—for people getting acquired brain injuries.The three-month consultation, which has been passed through BrainIAC and other groups, such as Headway, started only this month. We hope then to move on to the other categories. At the moment, we are considering people from 16 to 65 only, but we hope to consider a bigger age group and to widen the categories over time. However, as I said, the consultation has just started, and we have not received many comments back from health boards or local authorities.

It is very early days.

As a carer, I would like to illustrate the problems that exist. The problems are hugely complex for carers. The patient—the person for whom one is caring—is treated in a neurosurgical unit in the acute phase. From there, they are moved to their local hospital, which may or may not have a brain injury policy—it may have a head injury policy but not a brain injury policy.The person for whom one is caring could be placed in a short-stay surgical ward that wants to put patients through quickly, even though they have a long-stay problem that might last for months, with the result that they are viewed as a bedblocker because they are affecting the ward's statistics. There is a desire to get such patients out and, although the staff all work hard, with the best will in the world, they have no facility for looking after or managing people who, by that stage, are agitated rather than critically ill. Accidents happen—people fall out of bed and break their jaw, for example. Efforts are made to move such patients into rehabilitation.Age discrimination is another problem. Some units will not take people who are over a certain age. The idea of rehabilitation is to get people back into the community. The title of the excellent unit in Glasgow is the physically disabled rehabilitation unit. However, brain injury is not just physical. Although support staff are available to deal with other aspects, the injury is treated basically as a physical disability, but it is not a physical disability—it is a brain injury, with all the problems that go with that.There is huge pressure on the beds, so hospitals want to move patients with brain injuries out into the care of the local authority. There are 14 health boards and 32 local authorities. Some have fairly good policies for handling traumatic acquired brain injury, but some have none at all, so the level of care that someone will get is a lottery—it is both a postcode lottery and an age lottery.I have not even mentioned the problems that arise if the person for whom one is caring is employed. What agencies should one refer them to? If they are bringing up children, there are all sorts of long-term problems. It is not a question of being let off after a couple of months. We are talking about a separate condition. The number of people who have it is large—others here can tell you how many people have it. Once one becomes involved, one realises that it is a hidden epidemic in our society. Trying to get other services to fund treatment for and look after people with acquired brain injury is not the answer. If the petition is taken up, we will at least be able to find out what the real problem is and to put in place appropriate care programmes, so that even if the care that people with the condition get is not the best, it is at least appropriate. That would be a great help to those who look after people who have a brain injury.

I can speak only from my own experience. A group in Glasgow tried to put through a plan for dealing with acquired brain injury, but it was not funded, so funding is an issue. I would not say that it is possible to make great progress. It is pot luck—one needs to see the right person at the right time or to be told about and referred to bodies such as Headway or Momentum. Some people say that it took them 18 months before they got the necessary advice. That is not the way to handle a large group of patients. The figure that I have is that 275 people a day are seen for head injury and 45 of them get admitted to hospital, but head injury is not brain injury. People who have brain injuries are haunted by problems years after they acquire the injury. The problems remain with many people for the rest of their lives.

Acquired brain injury needs to be recognised for what it is. It covers a lot of different things. Many hospital patients are not given any outside services. They are not given any help. Patients sometimes come out of hospital and are just told, "Bye." They might go around looking for help, going from one service to another, but always being told to go and see a different one. Each time, they are just looking for one type of help, but that is not being recognised.

The consultation closes at the end of October. We intend to revise the standards in November and publish them by January.

The MCN has also been carrying out a mapping exercise across all health board areas in Scotland. It is not high-tech research, but it gives us an idea of the different pathways that exist across the country. We hope to have that available in November.

Of interested parties to contact?

The Association of Directors of Social Work.

Unless you define the entity, which is what the petition is calling for, it is not possible to work out a care pathway, as exists, for example, in the excellent breast cancer programme, or for heart disease or diabetes. A definition of acquired brain injury as an entity is required, so that it can be processed.