My Latent Self Anne Ricketts

My Latent Self

Recovering My Soul After Brain Injury
Recovering My Soul After Brain Injury

Falling Through The Net

If you have been fortunate enough to find this site in the early stages following a brain injury, or the onset of disease, to yourself or someone you love or care for, then one of the first things I really need to emphasise is that the damage done will be entirely unique to the individual. It goes without saying that the more severe the harm, the more likely it will be that the time it takes for you to see any improvement will be amplified. There are no rules though. You have a great deal of choice as to how well your recovery will go. If you are a family member, friend or carer, there is a great deal you can do to help.  I have no personal experience of coma or of vegetative state injury, but, in knowing people who are in a process of recovering from these much more severe conditions, I believe that whatever the prognosis, hope and a positive attitude should always be maintained.

The ‘urgent’ part of this message is this: for those who have not been hospitalised for any length of time it is possible that follow-up treatment will not be a matter of course or procedure – be aware. People with brain injury still ‘slip through the net’ and do not get the support they need from the health services. Their on-going problems are dismissed, ignored, and are often misjudged because they are not deemed to be of a medical nature. This does not mean that help is not available, and nor does it mean the people falling into this category should not receive support and help. What it does mean is that if the brain injury is not life-threatening, then there is a possibility the patient will be discharged without being given any information about what to do when and if difficulties arise or persist.

If you have been fortunate enough for the injury to be both understood, and for it to be taken seriously by the health services, then it should have been explained that the first six months are crucial to setting the foundations of recovery, and hopefully, there will have been a referral for specialist aftercare and rehabilitation. If this has not been explained and a range of persistent difficulties do persist, then alarm bells should ring and urgent specialist help should be sought. Similarly, if things have been explained well to you on discharge but there are on-going problems and help and support is not being received, then stop at nothing in making sure that care is forthcoming with as much haste as is humanely possible. If you are not usually good at making demands and being assertive, then now is the time to start. Too many people are still ‘falling through the net.’ This is the common term used for those brain injury patients who are ‘neglected’ in their initial diagnosis and care, and therefore do not receive the follow-up treatment that they should do. Too many hospitals still do not adhere to the guidance set out by NICE. Whether this is due to a lack of education or understanding, limited resources, limited finances, the unavailability of specialist professionals, or even bad attitudes, misguided procedures, or ignorance, it makes no difference to what help you have a right to expect.

At the time of writing, NICE, the National Institute for Health and Clinical Excellence www.nice.org.uk give the following guidance to your local NHS Trust: –

3.1.5 Advice about long-term problems and support services

All patients and their carers should be made aware of the possibility of long-term symptoms and disabilities following head injury and should be made aware of the existence of services that they could contact should they experience long term problems. Details of support services should be included on patient discharge advice cards.

Whatever degree of diagnosis is made, from moderate to severe brain injury, do not allow yourself to be dismissed lightly. This is especially so as regards the less serious concussions because severe problems can progress inconspicuously. Ask about what can be expected, what the likely problems might be, how long each symptom may last, and when you should become concerned. If you are still dismissively told that everything will naturally right itself in six months or a year – be alarmed. An acknowledgement is being made that things are not right and yet no help is being offered. Whatever the doctor has noted as being a potential problem, can also potentially be helped. Make sure that whatever diagnosis is given that it comes from a specialist consultant such as a neuropsychologist. Please do not rely on the opinion of whoever happened to be on duty in the A & E department if you attended hospital. This warning is especially important to take notice of if the person with the injury was unfortunate enough to need hospitalisation on an evening or weekend. This is when staff levels are more skeletal and there are fewer consultants or specialists on duty. Also, be aware that many general practitioners still do not have a good understanding of brain injury. I would advise that you go armed with information. There is a leaflet I have previously mentioned called ‘Could it be a brain injury? A Guide for GP’s’ which is available from Headway, the brain injury association. You will find them at www.headway.org.uk. Google for local branches in your area.

At the time of writing, the NHS Direct website advises, “Whether it’s a bump or a bang on the head or a more serious head injury, get advice now.” In other words, do not trust to luck when it comes to the possibility that further unseen damage may have occurred. I have a little ‘home treatment guide’ booklet issued by my medical centre and published by the local health authority and this says, “If a person was knocked out, has double vision, or cannot remember what happened, they need to be seen by a doctor.” Another booklet that I have, Accidents and First Aid, (from the publishers of ‘Which?’) advises “Complications arising from a head injury often show themselves late or show themselves insidiously. All cases, where there has been a cut, a blow or unconsciousness (however brief) or some impairment of the mental state and behaviour (however transient) should receive medical attention.

Take the time to learn as much as you can. ‘Headway – the brain injury association’ is a charitable organisation and their web site is a good place to start. From here you will be able to get in touch with groups in your local area whose staff / volunteers will be able to offer invaluable advice and support, especially for those whose disabilities are more permanently embedded.

 

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(c) 2011 - Anne Ricketts - Sandown, Isle of Wight, PO36 9EL - Tel: 01983 407557 - Traumatic Brain Injury, Loss of Self, Loss of Soul, Misdiagnosis, Survivors Guide
 

My Latent Self, Recovering My Soul After Brain Injury. Annie Ricketts. Isle of Wight, UK. Help Someone With Brain Injury, Glasgow Coma Scale.
 

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