Prolonged Disorders of Consciousness (PDOC) Assessment at Walkergate Park: Questions you may have and what to expect – Information for families, friends, and carers

Prolonged Disorder of Consciousness (PDOC) refers to people whose consciousness has been affected by severe damage to the brain. They have times when they are awake but have reduced or no evidence of awareness of themselves or their surroundings. To be classed as being in a PDOC state, this must last for more than four weeks.

Consciousness requires both wakefulness and awareness.

• Wakefulness is the ability to open your eyes and have basic reflexes such as coughing, swallowing and sucking.
• Awareness is associated with more complex thought processes and is more challenging to assess.

 
Immediately following their injury, the person may be in a coma, showing no signs of being awake and no signs of being aware. A person in a coma lies with their eyes closed and does not respond to their environment, voices, or pain. Over time, the person may start to gradually regain consciousness and become more aware.

If a person does not regain full consciousness after 4 weeks, they are classed as being in a PDOC state. PDOC is an umbrella term that may include individuals in a Vegetative State or in a Minimally Conscious State.

• • A person in a Vegetative State (VS) will have times when they appear awake but there is no evidence of awareness of themselves or their environment, or ability to interact or communicate with others. They may move part of their body; however, this is without purpose (reflexive or spontaneous).
• A person in a Minimally Conscious State (MCS) will also have times when they are awake but some of their actions show that they are aware of themselves or their surroundings some of the time. These actions are purposeful in response to things happening around them. They happen on more than one occasion but do not happen consistently.
   
  It is important to note that MCS is a spectrum based on different levels of responses. For example, a person in MCS- (MCS minus) may only look towards the door as you come into their room or towards somebody touching their hand. A person in MCS+ (MCS plus) may for example on occasion follow some instructions or nod or shake their head correctly in response to a question.

If a person no longer presents in a prolonged disorder of consciousness, they have ‘emerged’. A person who has emerged from a PDOC will be able to either:

• Use objects in a meaningful way e.g., brush their hair or put on their glasses. They would need to do this with two different objects on two consecutive occasions.

Or

• Identify an object/ picture when asked from a choice of two. They would need to do this correctly 6/6 times on two consecutive occasions.

Or

• Answer questions correctly. They would need to communicate yes/no to 6/6 questions about themselves or their surroundings on two consecutive occasions. This may be verbally, using gestures or looking pointing at yes/no cards.

 
For further information please refer to The Royal College of Physicians (RCP) (2020) National Clinical Guidelines which are available on the internet.

PDOC assessments try to determine the extent to which a person is aware of themselves and their surroundings. This is important to help plan for their care and future treatment.

In our region, Walkergate Park is the identified Level 1 unit specialising in the multidisciplinary assessment and management of PDOC. The team includes a number of Expert PDOC Physicians and Assessors (as defined by RCP guidelines) working within a skilled and experienced wider team.

A pre-assessment will occur before confirming your relative/friend’s admission to allow for a better understanding of their current presentation and care needs. If your relative/friend is accepted to the waiting list, a PDOC Outreach Assessor will make contact with family to offer initial advice and support.

Before your relative/friend’s admission, you are more than welcome to visit Walkergate Park to learn more about the ward environment, meet the staff and discuss how they will be cared for during their admission.

The environment for your relative/friend is very important and whilst you may feel that it is taking an extended period of time for them to be admitted, this is to ensure that we can provide the necessary care to meet their individual needs and keep them safe.

During the first few weeks of admission the multidisciplinary team at Walkergate Park – i.e., medical staff, nursing staff, physiotherapist, occupational therapist, speech and language therapist, dietitian – will conduct their assessments and early interventions. The aim is to optimise the physical condition of your relative/friend and environmental factors. This is to ensure they can respond in the best possible way when assessing their level of consciousness.

Multidisciplinary assessment and management may cover any of the following areas:

• Health monitoring
• Medical/pharmacological management
• Spasticity management
• 24-hour seating and positioning
• Pain management
• Skin and pressure area management
• Bowel and bladder management
• Nutrition review and management
• Swallowing assessment
• Tracheostomy management (if indicated)

 
In addition, it is crucial to consider your relative/friend’s environment and daily activities. People with severe brain injury often demonstrate altered sleep/wake cycles and limited capacity for information processing. This means that they may be unable to make sense of too much sensory information at once or get easily overwhelmed by constant stimulation. Therefore, the multidisciplinary team may consider implementing a structured timetable which includes both regular activities and rest periods.

Activities may include therapy interventions, personal care interventions, family/friends visiting, watching television, or listening to music. Activities will be chosen during the
stimulation periods that are appropriate to your relative/friend’s likes and interests.

Just as important as regular activities is the building in of regular rest periods throughout the day to alternate with activity times. Good quality rest can only be achieved if there is no stimulation at all, i.e., lying on the bed with no/minimal background noise, no music or television on.

There will be two PDOC assessors working with your relative/friend – a speech and language therapist and an occupational therapist. They will arrange to meet with you to discuss the admission process in more detail before commencing the assessment. They will be happy to answer any questions and concerns you may have at any time.

The PDOC assessors will conduct screening assessments to determine which PDOC assessment is the most appropriate one to use with your relative/friend. They will liaise with the rest of the multidisciplinary team to decide the best time to commence the formal PDOC assessment.

In order to ensure your relative/friend is able to participate in the PDOC assessment to the best of their ability, physiotherapy sessions are timetabled with a physiotherapist and/or physiotherapy support worker to prepare for the PDOC assessment.

Physiotherapy sessions are likely to involve assessment and provision of a suitable wheelchair to help your relative/friend to sit comfortably and well supported. A wheelchair from Walkergate Park is often provided on loan whilst community wheelchair services are contacted to request them to provide a wheelchair for longer term use if needed.

Photographs may be taken of your relative/friend in bed and in their wheelchair to advise all staff on how best to position him/her. This information is used to develop a 24-hour postural management plan. Your relative/friend will also be assessed for the presence of joint stiffness and of muscle spasticity (increased muscle tone). The management of this may include the use of postural equipment, splinting, serial casting, orthotic provision and liaising with the medical team regarding any appropriate medical interventions, for example medication changes.

If at any point during admission your relative/friend requires support with respiratory management (for example if they develop a cough or chest infection) the physiotherapist will provide this in collaboration with the rest of the multi-disciplinary team. Examples of how your relative/friend may be supported with their respiratory management are: changes in position, hands-on techniques or suctioning.

Some physiotherapy sessions may take place in the physiotherapy gym however it is likely that most sessions will take place on the ward alongside nursing staff to assist them with day-to-day postural management of your relative/friend.

During the remainder of your relative/friend’s admission physiotherapy input can vary. Once it is deemed that your relative/friend is in an optimal physical condition it is likely that physiotherapy input would reduce to allow the formal PDOC assessment to take priority. The physiotherapist will continue to monitor any physical changes during this time and continue to support the 24-hour postural management plan in place. If you would like to be involved in the postural management of your relative/friend, for example putting on splints or helping with stretches, your physiotherapist can support you to do this if appropriate.

The physiotherapist will also spend time supporting handovers to care teams in preparation for discharge. This will include ongoing recommendations on how the care team and family/friends (if they would like to), can manage any ongoing physical and postural needs.

There are three standardised PDOC assessment tools recommended to choose from by the Royal College of Physicians – the Coma Recovery Scale Revised (CRS-R), the Sensory Modality Assessment and Rehabilitation Technique (SMART) and the Wessex Head Injury Matrix (WHIM).

Sensory Modality Assessment and Rehabilitation Technique (SMART)
SMART is a standardised detailed assessment and investigates a person’s responses to a variety of structured prompts targeting each sense individually, e.g., sound, sight, smell, touch, as well as looking at functional movement and communication. The SMART needs to be conducted over 10 sessions, which can each last up to 90 minutes, to capture the best possible responses and ensure that the assessment is capturing the person at their best. It also tracks change over a period of time.

If indicated SMART provides an individualised structured treatment plan to ensure all findings are fully explored and responses enhanced to both identify evidence of awareness and optimise the person’s potential. The SMART can only be completed by accredited SMART assessors.

The Coma Recovery Scale – Revised (CRS-R)
The CRS-R is a standardised assessment designed to establish a diagnosis, to monitor changes in behaviour and recovery, and to support clinical decision making and assess treatment effectiveness. It does this by exploring six areas; including sensory, motor (movement), communication and wakefulness.

Each assessment usually takes between 15-30 minutes. Assessment should be repeated over 5 sessions to capture the best possible responses and ensure that the assessment is capturing the person at their best. It also tracks change over a period of time. The information gathered by this assessment can be used to inform an individualised structured treatment plan if indicated.

Wessex Head Injury Matrix (WHIM)
The WHIM is designed as an observational tool that records responses a person demonstrates in any surrounding and with any type of prompts. It allows the use of personalised meaningful objects and tasks. Responses are recorded on a sequentially ranked scale of 62 behaviours ranging from coma to emergence. Assessment should be repeated over 10 sessions to capture the best possible responses and ensure that the assessment is capturing the person at their best. It also tracks change over a period of time.

The information gathered by this assessment can be used to inform an individualised structured treatment plan if indicated.

The informal component of the PDOC assessment involves family, friends and carers recording their observations of the individual during day-to-day activities.

Until all the formal PDOC assessment sessions are completed and analysed, the assessors will not be able to give you specific feedback relating to the results.

On completion and analysis of the PDOC assessment the PDOC assessors will meet with you to explain what was found and what this may mean in regard to recommendations for the future.

You will also be given the opportunity for updates on a regular basis with your relative/friend’s multidisciplinary team. Please do not hesitate to get in contact with any member of the team for general feedback or if you have any questions.

We appreciate that you know your relative/friend the best and that you may like to be involved in their care whilst you are visiting them. You can do this by maintaining a quiet regulated environment for them while visiting with the TV and radio switched off and noise volume kept as low as possible. We would ask you to follow any guidelines put in place by the rehabilitation team in respect of positioning, splints etc. The PDOC assessors will discuss with you any specific activities that it may be beneficial to carry out with your relative/friend.

Whilst we appreciate that you may wish to bring in gifts and personal possessions (i.e., posters, fluffy toys, cushions etc.) to make the room more homely, we ask that you keep them to a minimum so as not to overstimulate them. We may ask you to bring in specific items (i.e., labelled photographs, favourite perfume, mobile phones) which can be useful during a treatment session.

During your visit be very mindful that even though you may not be getting a response from your relative/friend do not assume that they cannot hear you. Try not to have conversations about them or discuss things that you would not wish them to know about in their presence.

If there is more than one person visiting, only one person should speak at a time and if possible, should try not to touch the person at the same time. This is to avoid them becoming overstimulated. Speak slowly and use simple language, giving at least 20 seconds for the person to respond before continuing.

If you notice any new or meaningful responses, please report them to one of the allocated PDOC assessors.

After the PDOC assessment finishes, the focus will move to discharge planning. This may mean identifying a suitable discharge destination/care setting. The multidisciplinary team will seek to ensure adequate handovers are provided with guidelines to improve health management and to maximise quality of life.

If your relative/friend has emerged from the PDOC state and achievable goals have been identified, they may begin a Neuro-rehabilitation Programme at Walkergate Park.

The average length of stay for people admitted for a PDOC assessment is 12 weeks. Within this time, we aim to complete the assessment, discuss the outcomes with you and identify a suitable discharge destination.

You will be supported through the discharge process by members of your relative/friend’s treating team. Others who may be involved are a discharge coordinator from Walkergate Park, a social worker and a member of the Continuing Health Care team.

Discharge planning begins during the assessment phase of your relative/friend’s stay at Walkergate Park; you will be given a discharge date early on during admission (i.e., three weeks into their admission at the latest). You will be asked for consent to a referral to Adult Social Care to request a social worker to support the discharge process and help you to identify a suitable discharge location.

You will be asked to assist in the completion of a Continuing Healthcare Needs checklist. This is the process that looks at how the care your relative/friend receives will be paid for when they leave hospital. It might be possible for the NHS to contribute towards the costs of ongoing care where there are health care needs that must be met.

Your views and those of other family members and/or close friends are important, and you will be fully involved in the discharge process. Your relative/friend will be discharged when a suitable discharge plan is in place to meet their needs. There may be occasions when your relative/friend will need to be transferred into an interim placement or back to the referring hospital, but this will be discussed with you should this be required.

Before discharge, the receiving care team will be invited to meet with the treating team at Walkergate Park so that information about their needs, care and treatment can be fully explained to them.

Your relative/friend will be reviewed by the PDOC Outreach Service from Walkergate Park. Initially this takes place typically three months after discharge, and then at set timescales recommended by the RCP.

It is important for your relative/friend to be monitored for any changes to their level of responsiveness. Guidance will be given on how to do this. Should any improvements in their awareness and level of responsiveness occur, the PDOC Outreach Service should be notified.

A referral for ongoing community therapy will only be made if your relative/friend is able to actively participate in working towards achievable and functional goals. Review appointments may be arranged with specific specialist teams e.g., Spasticity Clinic. Details of this will be provided in the discharge pack. The General Practitioner (GP) will usually become the overall person responsible for your relative/friend’s care. If there are any changes to their condition or new issues the GP will make a referral to the most appropriate team for further advice.

Royal College of Physicians’ Guidelines for Prolonged Disorders of Consciousness (2020) –
www.rcplondon.ac.uk/guidelines-policy/prolonged-disorders-consciousness-following-sudden-onset-brain-injury-national-clinical-guidelines

The Knowledge Centre at Walkergate Park is a useful resource for further information.

• www.rhn.org.uk/our-work/our-services/assessments/smart/introduction-to-smart/
• www.healthtalk.org/ (enter search term ‘minimally conscious’)
• www.headway.org.uk/about-brain-injury/individuals/effects-of-brain-injury/coma-and-reduced-awareness-states/

• www.gov.uk/government/publications/nhs-continuing-healthcare-and-nhs-funded-nursing-care-public-information-leaflet
• www.nhs.uk/Conditions/social-care-and-support-guide/Pages/nhs-continuing-care.aspx
• www.carehome.co.uk

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Published by the Patient Information Centre
2023 Copyright, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust
Ref, PIC/800/1123 November 2023 V4
www.cntw.nhs.uk Tel: 0191 246 7288
Review date 2026