Amanda Cousins – Lack of Follow-up Care and Treatment Following Brain Injury

  • Introduction
  • Identifying Services
  • Identifying Gaps in Your Local Services
  • Want to Know More Detail?
  • Ongoing Developments in Neurological Rehabilitation
  • Checklist
  • The Fight for Better Services
  • What is Available in Your Area
  • The Medical Awareness Loophole
  • Visiting Your GP
  • Falling Through the Medical Net

Introduction 

This section will outline the current models of provision of brain injury services in general and the structure of how head injury and neurological rehabilitation services are generally commissioned in the UK.  It will provide basic advice in a form which is easy to follow about:

  • how to identify what services and support might be available in your local area
  • how to identify current gaps in your local services
  • who to approach to campaign for better services. It will give you some easy to follow pointers on:
    • How you might be able put together your case for better services.
    • Where to find examples of services and models of provision which you can share with people.
    • where to find local information, needed to make your case for local service improvements
    • organisations who can help you in your work
    • some easy things that do not cost a lot of money but which can help people with an acquired brain injury.

How to identify what services and support might be available in your local area

Depending on where you are in the world the services and support available to people with Acquired Brain Injury and their families vary enormously. Even within the UK services can vary across the country. In many countries outside the UK self help may be the only choice available in the beginning. Using websites like this one you can try to work through some key steps to identify what your symptoms and problems are and find some practical ideas on what you can do to help you own recovery.

Websites like this one can help people with information and often reassurance that they are not alone.  For many countries accessing services may be really difficult for people. Access to health services may rely on having health insurance which people may not have. There are many reasons around the world as to why people struggle to access services and expertise be it poor local transport, lack of local brain injury or neurological services or lack of available brain injury specialists.  The internet has become a game changer where people have access to it, both in terms of access to information information for patients and information for health professionals who have no specialist neurological rehabilitation skills.

Services used by people with acquired brain injury are broadly split into two groups.

1.Generic or general services are those who can be used by everyone and anyone. They are not specifically aimed at supporting people with a specific diagnosis but aim to support people with specific problems. An example of a generic service might be bereavement counselling or housing support.

2.Specialist neurological services are aimed at people with acquired brain injury whatever the cause including stroke and people recovering from a brain tumour. These services also provide therapy for people with a range of neurological disorders including spinal injuries and support for people with progressive neurological conditions such as Motor Neurone Disease. These services are staffed with doctors, nurses and therapists who have specific expertise in assessing and treating people with acquired brain injury and other neurological disorders.

To find what might be available to you, the internet is a good place to start. You can find out about local specialist health services by using key words in your search such as:

“acquired brain injury” / “stroke” / “neurological rehabilitation” / “head injury”

You can find out about generic services by using key words which relate to the issue you are struggling with such as:

“housing support”/ “benefits advice”/ “wheelchair services” / “community transport” / “carer support”

other places to contact for advice on services in the UK are

Headway       https://www.headway.org.uk/

Stroke Association UK          https://www.stroke.org.uk/

Different Strokes (aimed at younger adults suffering from Stroke) https://differentstrokes.co.uk/

How to identify current gaps in your local services

To do this you need to map the specialist services you have found locally against a nationally published list of services which should be available in a given area.

What services DO we have?         versus         What services SHOULD we have?

Remember that some specialist services are provided less on a “local level” but on a county or regional level. You may have to be transported to the right service for you, wherever this may be situated.

Health Services for people with Acquired Brain Injury are broadly organised in terms of a series of pathways depending on the cause of the brain injury. This pathway starts at the point of injury, stroke or in the case of someone with a brain tumour on diagnosis. The pathway should end at the point at which the individual is discharged from needing any further health services support.  Social care services for people with Acquired Brain injury tend to start on discharge home if someone requires support to manage at home.

A pathway can pass through a number of different services and settings.

If you have had a car accident with a resulting head injury the treatment elements of your pathway will differ from someone who has experienced a stroke but the aims are roughly the same. This is to limit any further damage to the brain that may have directly  occurred, treatment may be through medication, surgical or other treatments. Secondly management aims to support the brain to recover as much as it is able, as quickly as it can. Time is a crucial factor in the first few hours, treatment needs to start as quickly as possible after a traumatic brain injury injury or stroke as every second counts!

Fig 1 Key elements of a neurological pathway for ABI (Stroke, TBI and for people who are survivors of neurosurgery following removal of Brain Tumours). Level 1 provides  inpatient specialist neuro rehab for the most complex cases, level 2 provides inpatient specialist neuro rehab for less complex cases

Rehabilitation should start early in the pathway but increase in intensity once the patient becomes medically stable and the potential damage to the brain can be assessed. In the early days recovery may require a quiet environment and rest with good nutrition and hydration to allow injuries to heal.

The elements of these services are organised differently in each local area and the pathway itself may be populated by different organisations providing different elements of care. Depending on local history and commissioning strategies some areas have more access to inpatient rehabilitation beds than others.  

Level 1 and 2 neurological rehabilitation services are for people who need often more than four or more different types of therapy specialism to work together at once in an intensive and highly specialist rehabilitation programme. They deliver services to patients with highly complex needs. Stroke patients can be transferred to these units if they are younger and can tolerate and need an intensive programme.

 

Want to know more detail?

If you would like to read up on the detail of for example how patients are categorised into level 1, 2 & 3 please have a read through….

Specialised Neurorehabilitation Service Standards 7 30 4 2015-PCATV2-forweb-4-5-16.doc  Updated 30.4.2015. This documents and other useful detailed guidance is available on the British Society of Rehabilitation Medicine website:

https://www.bsrm.org.uk

Stroke rehabilitation inpatient units tend to be dedicated facilities for patients who need rehab following stroke but patients tend to be older and have other medical problems with which they need support. Patients may also be referred to local community beds for slow stream rehabilitation if they are frail and often older and need more time to recover.  People may need more less intensive therapy input and teams who are specialist in looking after frail older patients with complex needs.

Some areas may have invested more in community or outreach neurological rehab services including clinical neuro psychology. These teams can provide support after discharge from inpatient rehabilitation where a person continues to need a period of ongoing support to get back to as normal a life as possible. They can also treat people who are less physically disabled by their head injury and who can recover at home following discharge directly from the acute hospital. These services are ideal for those who are able to have their rehabilitation at home or in a local outpatient setting. The focus of these teams is helping people to become more personally independent and to develop coping strategies or plans which enable them to get back to employment, leisure activities and back to roles within the family as they recover.

In England the level 1 and 2a neurological rehabilitation services for people with the most complex Brain Injury are currently commissioned by NHS England (often written as NHSE). Level 2b Neurological rehabilitation units are currently commissioned by Clinical Commissioning Groups (CCGs). Some CCGs work together to commission a single level 2 neurological rehabilitation unit to meet the majority of their populations needs. Other CCGs either individually or in groups may spot purchase individual packages of neurological rehabilitation at level 2b from a range of local often independent sector units depending on patient need. Different commissioning arrangements exist for Scotland, Wales and Northern Ireland but the principles are the same.

Pathways for people with ABI need to be flexible as every person with an ABI is unique. Each individual patient within the pathway and network of service options need to address individual care needs along the way and personalised goal setting which changes as the patient progresses.

In countries with insurance based healthcare provision then it is up to healthcare companies and private therapists to deliver what health insurance companies require to meet the needs of their insured clients. This does mean that in such systems that services are sometimes easier to find as marketing of services is a priority. What is left to many patients in such systems is to find themselves the services they need. Primary care as we know it in the UK does not exist in every country. Access to specialist neurological expertise is not easy to access in many countries, even less so in the less developed countries of the world.

Ongoing developments in neurological rehabilitation

It is important to recognise that many rehabilitation services are in various levels in their ongoing development. Key to achieving ongoing improvements in rehabilitation services are continuous improvement plans which should be driven by front line staff and patient feedback and engagement.

There are a whole range of detailed clinical guidelines available to guide service development which are available on the Headway website:

 https://www.headway.org.uk/about-brain-injury/professionals/gps/clinical-guidelines/

For most outside observers of a rehabilitation service it is important to look for key developments and indicators of good quality. This is a basic set of questions that you can use in England.

  • Is the health system using rehabilitation prescriptions from its major trauma centres to promote effective handovers of care from regional to local health facilities?
  • Do services enable patients to have access to full range of clinical professionals to contribute to their rehabilitation as required? (a number of guidance documents give the anticipated list of specialists for a neuro rehab service)
  • Are patients given a key worker/ neuro navigator or equivalent who helps them move through the pathway?
  • Are patients and their key family members actively involved in the development and delivery of personalised care and rehabilitation planning, reviews and discharge planning?
  • Are outcomes for patients and patients experience of care recorded and does this feed into forward planning for the development of the service?
  • Are services available in the community which support the patient and family when needed?

A Quick Checklist to help you map local and regional services for people with Traumatic Brain Injury.

Question

Record where your local service is located

Make some notes on what it provides.

Where is my nearest major trauma centre and where are my local A&E departments?

 

 

 

Do my local A&E departments offer a head injury follow up clinic of any kind if I am sent home from A&E?

 

 

 

Where is the nearest regional neurosurgical service for my local population?

 

 

 

Where is my regional level 1 neuro rehabilitation unit for the most complex patients?

 

 

 

Where might local people go for rehab if they are less complex but need inpatient intensive   (level 2b) neurological inpatient rehabilitation ?

 

 

 

Do people locally have access to a community neurological  rehabilitation team  or therapy services specialised in treating  people with acquired brain injury and other neurological disorders ?

 

 

 

What clinical neuro psychology services are available in my local area?

 

 

 

What local specialist support services exist e.g. Headway

 

 

 

 

The fight for better services

In order for patients and patient groups to campaign more effectively for improved local services they ideally need to start with identifying the following information.

  1. What are local peoples experience of services and why are your seeking improvements?

Poor experience of services is often where any campaign or review of services starts! It is important however when making the case to outline local views in the context of national best practice models and the more people you can evidence who have identified the shortfalls the better.  

Patient stories are extremely powerful when putting together any case for change in health care provision. Always ensure that you can tell commissioners not just what problems local patients experience but the wider impact any lack of services had on their ability to achieve an ongoing quality of life or a positive outcome.

 When writing out a case study you ideally need to explain the problem the patient experienced as a result of their brain injury, the service or support that would have been helpful to them and the impact experienced as a result the lack of that service.

For example :

Telling the story in the right way gains you more impact, this is a fictional example of one good way to layout the case study:

Patient AL experienced ongoing problems following – for example a concussion injury three weeks ago as a result of a motorcycle accident. He suffered from (list the problems) for example – fatigue, had difficulty in concentrating and dealing with multiple tasks at once. He was not provided with.. (list the care he was given) but also what he did not receive for example “he was treated in A&E and received excellent treatment in the dept but there was no  follow up following discharge from A&E.  Outline what would have been usefulfor example  Information on what to expect as a result of his concussion and where to get help with coping strategies would have been really useful. Outline the gaps in service for problems with the pathway which has been experienced. For example “Some form of follow up clinic which patients can be referred into for help is what was needed.” Outline the poor outcome which was experienced as a result of a lack of services and support to meet his needs “ He tried to get back to work without support but is failing to cope and as a consequence has lost his current job role.” Also do not be afraid to talk about how peoples experience of services made them feel.

  1. What is the geographic population you are seeking to improve services for?

Services for people with ABI are normally planned on a variety of population bases.  For level 1 services one unit may serve a population of between 1-3 million people. Level 2a neuro rehab services may serve a population of between 600,000 to 1 million people. Level 2b services serve a population of between 250,000 and 500,000. Community neurological rehab teams often serve populations of less that 250,000.  When making a case you need to be clear on your geographic area of interest be it a county, region or Clinical Commissioning Group area or any geographic footprint you choose. In England you might choose an area covered by an existing System Transformation Plan. These exist and you can access your local plan via your local Clinical Commissioning Group website. You need to identify the basic population statistics of the area you choose. Normally this is defined as the total population by age band and these figures can often be found on local government websites.

Once you have identified the area or population you wish to make the case for you need to identify the number of people with acquired brain injury who are likely to be found within this population.

  1. How many new cases of people with Acquired Brain Injury would a population of this size expect to see each year?

There are national statistics which can be applied to your population e.g. cases anticipated per 100,000 population. Some of these are put together by diagnosis which if needed you can helpfully put together. There will be figure for Traumatic Brain Injury, stroke and a range of other neurological conditions. 

Brain injury and stroke statistics are found on the national websites and differ between countries of the world. You may need to get you calculator out as are often expressed as numbers per 100,000 population. There are two figures which are useful.

Incidence  –  this is the number of new cases a population will statistically generate each year

Prevalence – this is the number of people within a given population who have ongoing experience of  acquired brain injury.

Remember local data is often available via local organisations or local NHS trusts. If approaching an NHS trust or hospital for information then you need to be specific in what data you are asking for. You may need to specify “traumatic brain injury” from “stroke” and if possible you can given them codes from ICD 10 in the UK to search for the data. Remember you cannot be provided with data which is patient specific or which has any identifiable patient information on it. Trusts can also decline to provide data which they do not routinely collect or which would require a significant amount of data analytics to supply.  You can enquire about data via a direct approach to the trust concerned or via their Freedom of Information ( FoI) process which is normally described on any NHS website.

  1. Who commissions local services? who is your audience?

You need to identify your audience and key people to whom your case for improvements will be aimed. These need to be people with a level of authority to enable your case to be considered in the right meetings where decisions on strategic priorities and funding are made. If you are focused on a larger area you may have to approach a number of Commissioners all at once with your case for improvements.  In insurance based health systems the case is made to local healthcare providers who need to see the demand that they are not meeting and the potential income this may generate for them.

  1. Who are my potential partners in making the case?

Partnership proposals are often more persuasive politically than single agency campaigns. If you are trying to improve overall provision of neurological rehabilitation you can usefully add in the statistics of all groups of patients with neurological rehabilitation requirements, working together can make a stronger case for improvements whether you have an ABI , a spinal trauma, a stroke or a progressive neurological condition such as MS and Motor Neurone Disease.

  1. What local services are in place?

This is the fun bit of detective work and there are details below to help you put together a map of local provision

  1. How does this compare with national models of provision?

Quite simply wherever you are in the world you are looking for a pathway of provision which includes

  • Emergency transport provision with protocols in place for the management of stroke and also for head trauma.
  • Accident and emergency provision which has best practice models of immediate management of head trauma and stroke. This needs to be backed up with intensive care facilities and services.
  • Provision of access to Neurosurgical services for patients who need them.
  • Provision of access to a range of neurological rehabilitation options which can cope with different level of complexity of patient. This will include inpatient and community options for people who need follow up in the community or who are less physically disabled. Provision will be needed for people with either high levels of cognitive and behavioural difficulties and also those with complex physical disabilities.
  • Provision of access to Neuropsychiatry for those rare but highly complex patients who suffer from severe behavioural difficulties following an ABI and who may require care in a secure unit.
  • Provision of longer term support when needed to help people get back to work, family roles and personal independence.

The question you need to research at a local level is how do local services stand up against models of best practice? The British Society of Rehabilitation medicine can offer some guidance on proposed UK models of overall provision. There is also a need to set quality standards which enable equity of the quality of services to be assured. https://www.bsrm.org.uk

For the US you can find useful papers via the American Congress of Rehabilitation medicine – https://acrm.org/

  1. What research are you going to present which supports the case for better provision?

Depending on what you are arguing a case for appropriate use of high quality research to back up your case is important. Contact national patient organisations for advice on this one and look at appropriate websites such as the BSRM website and  websites for other professional bodies, and undertake internet searches using appropriate keywords. Research is moving forward all the time so you need to keep you eye out to the most recent publications!

  1. What are the additional key elements of a good system of provision and are these in place?

Within the UK there are additional services or processes in many areas which have been developed and which can be useful and these are worth consideration.

  • Rehabilitation Prescriptions
  • Neuro Navigators
  • ABI passports
  1. What are improvements in local services likely to cost?

For a completely new service, the cost will depend on where you are in the world. In the UK there are standard national pricing structures called Payment by Results (PbR) for many services but these are not yet developed for many elements of an ABI pathway or for neurological rehab services. Prices are in most instances worked out based on the element of provision needed, staffing, overheads, facility costs, equipment costs etc. the NHS has a nationally agreed salary scale for staff which can make it easier to calculate approximate staffing costs in the  UK. This is a skilled task and one not for the faint hearted!  Taking advice from potential providers of a service which you may be campaigning for may be useful.  It is important to find someone who has experience in this area to help you if needed.

  1. What would be the benefits for the local population, patients and commissioners of an investment in local provision ?

This is one of the most powerful elements of any proposal, campaign. What does everyone get out of an improvement in services or a change in provision?

This can include such potential benefits such as

  • Reduced levels of disability in the population as a result of better provision of rehabilitation.
  • Reduced levels of long term health and social care costs as a result of increases in personal independence achieved by the provision of rehabilitation and assistive technologies.
  • Reduced levels of offending behaviour and homelessness in people with ABI as better support enables people to function better as part of their communities.
  • reduced levels of long term unemployment as a result of better concussion support provision and return to work specialists.

The most powerful research sadly when you need commissioners of services to sit up and take notice is about money. Rehabilitation costs money but the benefits in long term care savings and reductions in the long term costs to society can be included and are often very powerful messages to give.

Have a look to see what the latest research is saying go to you search engine and type in “cost effectiveness of brain injury rehabilitation” and see what turns up.

If you want to see what is available in your local area then there are often ways you can find out.

Find out about Local or national branches of Brain Injury related charities such as

Headway, Stroke Association,

put Acquired Brain Injury into a search on your computer and see what you can find?

There are often charities who have a special interest in Acquired Brain injury or local support groups who can provide advice and information for people with ABI and their families. Local Voluntary agencies often have a very good understanding of local services and any gaps in provision. Whilst many areas have a range of provision waiting lists for some therapies may be long or restricted in what they can provide.

You can ask your local doctor or find out from your local hospital or health clinic if any of the following services are available to help you?

If you have access to the internet you can try to search for local services using these key words below. Add the name of your county or local area to narrow your search.

 “Community Neurological Rehabilitation team”

Many areas of the UK now have their own Community Neurological team or service looking after in the main people with complex needs as a result of Acquired Brain injury, stroke or other neurological condition. They normally consist of a mixture of different professions all with specific expertise in brain injury and / or neurological conditions.

“Head injury Clinic” or “Concussion Clinic”

In some areas the local health services provide a concussion or head injury outpatient clinic which can take referrals from local general Practitioner (GPs). These clinics can provide an invaluable starting point for people who are physically fine but have ongoing problems associated with their concussion injury.

“Consultants in Rehabilitation Medicine” – This speciality is often accessed via level 1 and 2 inpatient rehabilitation services in the UK but in some areas they also run outpatient clinics which can be accessed by a GP referral.

“Consultants in Neuro psychiatry” – these consultants are usually accessed as part of highly specialists level 1 neuropsychiatry unit services and specialist forensic units in the UK. They normally assess and treat the most challenging of cases where patients can be a significant risk to themselves and others around them.

“Clinical Neuro psychology” – this profession are experts in assessing any damage to the brain and its impact on your ability to think and behave as you did before the injury. They can help with problems such as fatigue management, poor concentration, decision making, and much more.  Clinical neuro psychologists work in mainly within rehabilitation teams and community services and also in private practice.

“Occupational Therapy” – to help with assessing the things that you struggle to do in terms of practical tasks such as bathing, personal care, moving around the home or local area, work based activities and to help with equipment and techniques to help you gain more independence. Practical solutions may be needed to overcome physical disability or loss of the ability to complete previously familiar tasks such as shopping, personal care or planning a return to work.

“Physiotherapy” – to help assess any resulting problems with movement, sensation and co-ordination following an Acquired Brain injury or major trauma.

“Speech and Language therapy” – if you have problems with speech, communication, understanding what is said to you or swallowing then the speech therapist can assess and hopefully help you overcome these difficulties over time.

“Specialist nurses – treating people with neurological disorders”

Such nurses can be a great help in finding out what support may be available in your local area. They will take care of any wound care you may need and also can help with access to social support or any nursing needs you may have.

“Bereavement Counselling” or “Post Traumatic Stress”

If you have been involved in an incident which has involved any number of casualties or injuries to others or the death of a loved one then you will be dealing with more than your own head injury. Getting over any Trauma is difficult and support to help you get through this is really important to aid your overall long term recovery.

Clinical Case Management support – this provision provides an experienced individual from a range of backgrounds to help you navigate the local services to ensure that you can access what you need.

Vocational Rehabilitation -Support for people to get back into employment

For people already in employment support can take many forms but is sadly not universal. Vocational Rehabilitation may be available in the UK  through local community rehabilitation teams who can support you in adapting back into to your workplace. If you have problems with access or equipment help can  often be secured to sort this out.  For people who use computer systems having one which  allows you to dictate what you need to put down on paper may help if you cannot use a keyboard. For people in employment there are rights you have, to ensure that you are not discriminated against as a result of any remaining disability. However for some people the level of cognitive or physical disability resulting from a brain injury may make a return to some forms of previous employment impossible for some time. It is important to have a thorough assessment of skills and if necessary look for new opportunities or retraining options. It may be the opportunity to undertake a career change and take a new positive direction.

The Medical Awareness Loophole

This section will deal with why this is an issue and how to help your GP to help you find the right treatment and support to meet your needs.  I will be imparting practical advice on how to plan for and approach the conversation with your General Practitioner. 

It will also give some tips to what can also help people to access information and services in a local area by working with their local GP surgery and local Libraries to raise awareness themselves. Also keywords for a google search !

This section will focus on those with mild to moderate injuries but will also briefly touch on the lack of medical awareness of how doctors can lack awareness of what may be needed in order to support  people with complex Brain Injury including those with both physical and cognitive or behavioural difficulties.

Also ensure that you have a record of any concussion injury you have had in the past as repeated concussions can often cause more problems to arise.

Get more control of your health and care – get the NHS App

The NHS App is the first app from the NHS for people across England. It is a simple and secure way to access a range of NHS services on your smartphone or tablet. Use it wherever you are, at any time of the day or night.

Use the NHS App to:

  • book and cancel appointments – search for, book and cancel appointments at your GP practice
  • view your record – get secure access to your GP medical record
  • order repeat prescriptions – see your available medications and place an order
  • check your symptoms – find trusted information on hundreds of conditions and treatments and get instant advice
  • register to be an organ donor – easily manage your preferences on the NHS Organ Donor Register
  • choose how the NHS uses your data – register your decision on whether your data can be used for research and planning.

Visiting your GP or seeking help from any health professional.

When many people attend the GP surgery they often feel under pressure as your allocated time slot may be short. This is not helpful for people with memory issues and difficulties concentrating.

The key is preparation!!!

Think about the likely way the conversation will develop and write down what you want to say and any key questions you have.

GP :    How can I help you today ?

You :  I am really struggling ( start with a simple statement of how you feel )

GP:    In what way are you struggling ?

You:    ☹ start the next piece of the conversation with a little bit of your recent medical history for example .”I had an accident recently and banged my head , I went to A&E as I needed stitches and  then they sent me home to rest and said I should be back to normal in a week or so but I am not back to normal.”

GP may then be able to confirm this on your medical records which they will hopefully have up on the screen of their computer. If they have not received a copy of your discharge summary then you have helped to keep your notes and your GP up to date.

You: List your remaining difficulties and think about these carefully before hand so that you do not miss anything out.

                        Share your list of issues with your GP.

You: Questions you need to ask about .

                        Share your list of questions for example :

  • Can I drive?
  • Can I get help and advice with regard to my return to work? as I will not be able to cope currently (very important if you are self employed or run your own business)
  • Is there anyone that I can be referred to who can help me with my recovery?

Your GP will be able to do a number of things, give advice on further time needed to recover, sickness certification to give you time to recover before returning to work and referrals to local services where these are available.

Concussion services are often not able to offer a cure what they can do though is assess the nature of your difficulties and advise on coping strategies which can help with your recovery.   If you find a local service which you feel may be useful such as a community neuro rehab team then do ask your GP to refer you for an assessment.  

Keeping your local GP surgery up to speed

There are ways which you can support your local surgery as they may only see someone with an Acquired Brain Injury on rare occasions….

  • Do they have leaflets in the surgery which can signpost people to local voluntary organisations such as Headway?
  • Do they have a list of services available to treat and support people in the community with ABI?

GP surgeries are usually only too grateful for any help people can give them and often have racks for leaflets and information which other patients and carers can pick up !

Falling through the medical net following brain Injury.

This section will deal with why this can happen and how to get back into the UK system if following a concussion you have ongoing problems. My focus here will be those who are most at risk of “falling out of the system” as they have no physical or visible problems on the surface.  It will help people with post concession difficulties, tips on how to get back into the system and to gain access to the help they may need. It will give mention also to those who may be eligible to make a claim if their problems have been as a result of an accident which was someone else’s fault. 

Why do people fall out of the system?

Patients and families often need to learn very quickly to ask questions and to always ask what next!!

Patients can fall out of a system which is designed to support them along a pathway of care for many reasons.

  • Gaps in service provision. Where gaps exist not all patients will be able to have their needs met.
  • Lack of knowledge within a health system of the range of local services available
  • Lack of referral guidelines for General Practitioners to enable them to access rehabilitation services at a variety of levels.
  • Lack of available specialist therapists in the community with links to general practice.
  • Lack of experience displayed by younger GPs who sees many patients with a wide variety of conditions. Acquired brain injury is more not something many doctors come across often so may have to do some research themselves.
  • Lack of training for junior doctors in ABI and concussion management

For patients with mild TBI or concussion injuries problems can occur if:

  • No information about concussion injuries is given on discharge from an A&E dept. Without this the patient will not know what to expect and the likely recovery time and also what to do if problems persist.

Or

The concussion is missed due a focus on other injuries, always make sure to ask those who witnessed your accident and you in the intervening time about whether you ever lost consciousness or became confused. Did you have a bang to the head when the accident happened or did you stop suddenly as in a car accident.

 

For tips on how to handle an appointment with your GP with ongoing ABI issues please see the section. The Medical Awareness Loophole

Getting back into the system

Within the UK the route into the NHS specialist services is mainly via your General Practitioner but referrals can be made also by other health professionals.

Talk to:           Your GP

                        Your Local Headway

                        Your local Neuro navigator/ stroke coordinator if there is one. Your regional Level 1 neuro rehabilitation unit may know of key contacts in your local area.

Do your own research on local services so that you have an idea of what you might benefit from most. Whilst the GP is the gatekeeper, you the patient are in most cases the best expert at what problems you have. Together GP and Patient can agree a way forward to in most cases a full recovery over time.

Handy Tips

Always make sure you have copies of:

Your discharge letters – you should be given one on discharge from hospital or sent one following discharge in the post if not ask for a copy from your GP who will also have received it. This should also apply on discharge from any inpatient rehabilitation facility.

Your rehabilitation prescription of you have attended a major trauma centre  and have been discharged back to a local hospital or home – always ask for a copy.

Any relevant care plans to Indicate any ongoing care that has been organised for you so that you can chase up if it does not arrive.

Any patient information that you may have been given regarding your injuries

Names and contact details of people who you may need to contact in the future for information and who have been key to your care and rehabilitation.

  • Your GP
  • Your Consultant
  • Your care manager / key worker if you have one
  • Your social worker if you have one
  • Your community neuro team – if you are In contact or have been referred to one
  • Others you may find personally useful such as Headway, Stroke organisations.

 I’m Fine!?… really ?

People are often very good at saying they are fine when families know they are not and that they are struggling. Some of this may be a defence from people asking more difficult and taxing questions. Sometime people with an ABI can have very little insight into their difficulties and this can prove a problem for families. It is then often the case that it is the spouse or friend who persuades the patient to seek help. If this is the case then the same routes can be used to start a conversation on what might be the best way forward.