Attend Factsheet 1l:
The early stages
There are different pathways for different kinds of acquired brain injuries. If there is a very serious injury the person will be taken to an accident and emergency department, where they will be assessed and their condition stabilised. They then will be transferred to the neurological centre or general hospital. Those with minor head injuries may not spend any time in the hospital. Post brain injury, the period in the hospital is usually more distressing for the family and friends than it is for the person with the injury, because they may be unconscious or have no memory of the period. Though you may be concerned with your loved one’s wellbeing, it is important that you remember to take care of yourself as well at this time. You will want answers that may not be able to be answered immediately by medical professionals. In the early stages it is really a matter of taking each day as it comes. Patient Advice and Liaison Services (PALS) are there to help with any concerns you may have about your relative’s treatment. Ask medical professionals how you might be able to help your relative, organise visiting hours for friends and family and provide interest and stimulation. Make sure to help yourself, lean on others, take rest breaks, make financial arrangements and make arrangements with employers.
Understanding brain injury
There are many different types of brain injury, Traumatic brain injury (TBI) commonly occurs due to car accidents or assaults, Stroke occurs when the blood supply in the brain is blocked by a blood clot or a burst blood vessel in the brain, Encephalitis is the inflammation of the brain caused usually by a viral infection , Meningitis inflammation of the membranes that surround the brain caused by bacterial or viral infections, Hypoxic/anoxic injury is caused by lack of oxygen to the brain and can happen because of a heart attack or near drowning or even monoxide poisoning, Brain Tumour is an abnormal growth of cells in the brain, and Hydrocephalus which is a build-up of cerebrospinal fluid(CSF) in the brain. Any of these injuries can have different effects. The brain controls everything the body does. There can be physical effects, cognitive (thinking effects), and emotional and behavioural effects. You may even see changes in your relative’s personality. If this is the case the best thing to do is not hang on to the person who they were before the injury, but accept their changes. Carer’s support groups can help.
Leaving hospital
There are many different courses of action that can be taken after a relative is medically stable and all physical injuries have been treated. It is important that your relative’s social and health needs are assessed by health professionals. It is a necessity that your relative’s discharge process is done thoroughly, so that the right care pathway is chosen. Your relative’s care package can be funded in one of the following ways; through continuing healthcare or community care. After discovering what your relative’s needs are, a care plan can be outlined. Different types of care plans are inpatient rehabilitation, outpatient rehabilitation, community rehabilitation, residential/nursing care, intermediate care, and care at home. Rehabilitation helps the brain learn alternative ways of working to minimize the long term impact of the brain injury. It helps the survivor and their family deal with the remaining effects.
Becoming a carer
Carer’s have a right to an assessment to see if they deserve better support. The Carers and Disabled Children Act (2000) says that carers aged 16 and older who give regular, considerable amount of care to someone aged 18 and older, have the right to get an assessment of the needs they may have for their care. The Carers (Equal Opportunities) Act (2014) gives a duty to local authorities to ensure that all carers know that they have a right to an assessment of their needs. There is no definition of the term regular or considerable therefore if you look after a friend for a couple of hours a week you can still apply for an assessment. To apply for an assessment you contact your local council’s social services department (which should be in your local telephone directory or you can find more information and apply online though the government website at www.direct.gov.uk. After an assessment social services will produce a care plan on the support that was assessed as needed. Social services may be able to provide you with help with housework and looking after your relative, equipment and adaptations to your home, emotional support and breaks from caring. If you have any complaints you can contact the Care Quality Commission (CQC). Different benefits are Carer’s Allowance (CA), National Insurance contributions and pension credit, Community Care Grants, and Carer’s Credit. There are different vehicle and transport support like the Motability scheme, blue badge parking scheme, disabled person’s railcard and hospital travel costs scheme. It is also important to know that the Employment Act (2002) gives you the legal right to ask for flexible working hours if you are caring for an adult relative or an adult that lives at the same address as you. Though if your employer has a valid business reason they can deny this request.
Relationships
Family roles can change drastically, especially when the person with the brain injury used to be the main bread winner. There can be positive aspects to this like the chance to spend more time to bond with the children. If any family member seem to be having particular trouble adjusting, help them not feel isolated and let them know what they are feeling is normal and natural. Family therapists are very helpful in the rehabilitation process. Neuropsychologists who specialise in sexual relationships are also important to talk to, because sexual relationships will change as well. It is also true that friends may drift away not because they want to, but just because they don’t know how to deal with the situation. Keep in touch with your friends and your relative’s friends, give them certain jobs to do and pass on any helpful literature.
Caring for yourself
It is important that you take care of yourself as well. Maintain your friendships, it will help you have a healthy and happy life. They provide a lot of support. Keep up with your hobbies and interests especially those that have social interactions. You should stay healthy and take some exercise. Exercise helps you deal with stress. It is important to take a break from caring every now and then to have some time to yourself. Carer support groups can help you as well.
Young carers
It is possible that you may take on new practical and emotional caring responsibilities. There are a lot support resources out there like, The Princess Royal Trust Carers (www.youngcarers.net), Carers Direct (08088020202 or www.nhs.uk/carersdirect/young), Childline (08001111), The Children’s Society (www.youngcarer.com),
Conclusion
Being a carer can be a very difficult role especially for a relative with a brain injury with changes in personality, physical disabilities and cognitive functions. It is important to get support for yourself and your relative.
Contact
This factsheet is brought to you by Attend
Attend.org.uk
