Parents, patients, paid or unpaid carers

A complex long term condition is a health problem that cannot be cured. Children and young people with complex long term conditions need a lot of extra support day to day to ensure that they stay healthy and well. Many children and young people with complex long term conditions may be described as having special needs or disability.

The Carer Skills Passport is currently in the development phase: different training modules and updates will be gradually introduced over time. Carer Skills Passport training is designed and delivered as a partnership. Expert parents, expert patients and professionals are working together to

• Raise awareness of the Carer Skills Passport
• Identify and prioritise parents’, paid and unpaid carers’ training needs
• Identify the best ways to deliver training and updates, ensuring that training is accessible, relevant and effective
• Co-design training modules, ensuring the learning needs of all participants are met
• Deliver training as a partnership, ensuring consistency, facilitating shared understanding and increasing awareness of perspectives of others involved in caring for the same child or young person

A competency is the ability to safely perform a specific caring task.

The Carer Skills Passport competencies are identified by surveying parents, paid and unpaid carers to identify their training needs. The results of this Training needs assessment, together with guidance provided by care skills trainers and subject matter experts, is used to develop the Carer Skills Passport master competencies list and identify priority areas for development of standardised, competency based, training and assessment materials. The full portfolio of competencies, and available teaching and training materials can be accessed here

The Carer Skills Passport team has identified a total of 79 competencies that may be required to care for a child or young person with a complex long term condition. The competencies are grouped into 11 domains:

1. Behaviour
2. Communication
3. Mobility
4. Nutrition food and drink
5. Continence and elimination
6. Skin and tissue viability
7. Breathing
8. Drug therapies and medicines
9. Psychological and emotional
10. Seizures and altered consciousness
11. Emergencies

The competencies are also classified as core competencies recommended for all parents, paid and unpaid carers, additional competencies that may be required depending on the needs of the child or young person being cared for and specialist competencies that are normally only provided by trained nurses or some expert parents. The full list of competencies can be found here

A competency assessment demonstrates that a parent, paid or unpaid carer is able to safely undertake a specific caring task.

Assessment may be undertaken in a number of ways depending on the specific competency being assessed including

• Completing a workbook or an online test
• Talking through the steps required to complete the caring task with a Care Skills Trainer
• Demonstrating the skill on a mannequin
• Demonstrating the skill on the individual child or young person

The training you need will depend on needs of child or young person you are caring for, and also your needs as a carer. When you register with the Carer Skills Passport we will ask you go to complete a training needs assessment form to help identify your training needs. This will be updated each year to ensure that we continue to support your caring needs.

After you have registered for the Carer Skills Passport we will contact you with available training, based on what you told us in your training needs assessment. You can also access our Register of Accredited Carer Skills Passport Trainers to request bespoke training according to your individual needs.

The type of training required will depend on the specific competencies to be achieved. Training may include

• Online training including reading materials, videos and workbooks,
• Classroom training, which may include the use of mannequins to demonstrate and practice skills
• Simulation, where you will get the chance to practice skills in a simulated care environment using mannequins and actors to help make the situation feel real but safe
• Bedside training with the individual child or young person you will be supporting

The Carer Skills Passport team has identified a total of 79 competencies that may be required to care for a child or young person with a complex long term condition. The competencies are grouped into 11 domains corresponding to the domains of the NHS Continuing Care Decision Support Tool. The Carer Skills Passport is currently in the development phase: different training modules and updates will be gradually introduced over time. The Carer Skills Passport team has identified 13 priority competencies to be included in the first wave of standardised, competency based, training and assessment materials. The priority areas are as follows

1. Oxygen administration
2. Oxygen saturations and vital sign monitoring
3. Oral suction
4. Nasal suction
5. Tracheostomy suction
6. Nebuliser
7. Buccal drug administration
8. Professional boundaries and confidentiality, social media
9. Looking after your own needs
10. Difficult conversations and questions
11. Resuscitation training
12. Raising concerns
13. Recognising a deteriorating person

The full portfolio of competencies, and available teaching and training materials can be accessed here

Carer Skills Passport training is provided in different settings depending on the type of training required. The aim is to make training as accessible as possible. Training may include

• Online training including reading materials, videos and workbooks
• Classroom training, which may include the use of mannequins to demonstrate and practice skills. Choice of classroom setting depends on the needs and preferences of carers being trained and the availability of appropriate facilities
• Simulation, where skills are practised in a simulated care environment using mannequins and actors to help make the situation feel real but safe. Choice of simulation setting depends on the needs and preferences of carers being trained and the availability of appropriate facilities
• Bedside training with the individual child or young person receiving care. Bedside training is provided in the most appropriate setting for the individual child or young person

The frequency of updates will depend on the competency and whether there have been any recent changes in practice. We will automatically contact Carer Skills Passport holders when their training needs updating and inform them of any important changes in practice. We will also let Carer Skills Passport holders know when new training modules become available.

Once you have successfully completed training for a specific competency we will automatically contact you when your training needs updating. We will also let you know when new training modules become available, inform you of new agencies recognising the carer skills passport and any critical updates on competencies you currently have

The Carer Skills Passport Trainers Directory lists Carer Skills Passport Accredited trainers who are willing to be contacted with requests for bespoke training. When you have been accepted for the Carer Skills Passport you will have access to the Carer Skills Passport Trainers Directory and Training Calendar. You can then identify available training in your area based on the needs of the child or young person you are caring for.

The Carer Skills Passport is based on standardised, evidence based competencies. The competencies are developed by a panel of subject matter experts and agreed across participating organisations providing care in different care settings. Training and assessment is provided by experienced, accredited trainers according to the agreed standards. Parents, paid and unpaid carers are trained side by side ensuring consistency and facilitating shared understanding. A central record of training and assessment is used to ensure training is kept up to date. Standardised, up to date training and competency assessment allows the Carer Skills Passport to be transferable across all care settings. For example if a parent or carer provides care to a child at home, they will also be supported and empowered to deliver the same or equivalent care if the child is admitted to hospital.

The Carer Skills Passport itself, including access to training is free of charge to parents and unpaid carers. Paid carers, care-skills trainers, continuing care commissioners and managers may be charged to use some elements of the Carer Skills Passport. The carer skills passport is a not-for-profit collaboration. Charges are made only when absolutely necessary in order to cover costs, ensure sustainability of the Carer Skills Passport and keep the standardised, competency based, training and assessment materials relevant and up to date.

If you are a parent, paid or unpaid carer you can register for the Carer Skills Passport online. We will ask you to verify your status as a parent or unpaid carer. Core elements of the Carer Skills Passport are available free of charge to all users. Paid carers may be charged to use some elements of the Carer Skills Passport.

The Carer Skills Passport is currently in the development phase: different training modules and updates will be gradually introduced over time. If you are a parent or unpaid carer you will get the opportunity to access training free of charge. The type of training required will depend on the specific competencies to be achieved.  Training may include

• Online training including reading materials, videos and workbooks
• Classroom training, which may include the use of mannequins to demonstrate and practice skills
• Simulation where you will get the chance to practice skills in a simulated care environment using mannequins and actors to help make the situation feel real but safe
• Bedside training with the individual child or young person you will be supporting

1. Parent, paid or unpaid carer registers for carer skills passport :

• Registration includes consent for data storage and information sharing, agreement to terms and conditions
• Online or smart phone
• Paper form

2. The Carer Skills Passport team reviews the application:

• Verifies applicant’s status
• Adds applicant details to the Carer Skills Passport database – separate from website for security and backup
• Sends secure log on details to parent, paid or unpaid carer

3. Parent, paid or unpaid carer completes Carer Skills Passport training needs assessment including

• Current competencies
• Required competencies
• Training preferences: classroom or online, training location, availability
• Whether they have access to a printer, email and internet

4. Registered parent, paid or unpaid carer is offered:

• Training and assessment as it becomes available
• Access to register of organisations accepting carer skills passport
• Access to register of accredited trainers
• Access to training calendar
• Newsletter

5. When parent, paid or unpaid carer completes training and assessment

• Details added to Carer Skills Passport database – separate from website for security and backup
• Details added to hand held Carer Skills Passport
• Details added to online record of Care Skills training (available to be viewed through their individual log-in)
• Automatic reminder set up for update training when this is due

The Carer Skills Passport is transferable across different care settings ensuring children and young people receive the same standards of care at home, at school, in residential short break care and in hospital. The following steps outline how Carer Skills Passport trained parents, paid or unpaid carers can use the Carer Skills Passport to facilitate caring across care settings.

• If possible, before admission, the parent, paid or unpaid carer or care manager checks online that the new care setting recognises the Carer Skills Passport
• The parent, paid or unpaid carer shows their Carer Skills Passport to the ward manager or care manager in the new care setting.
• The ward manager or care manager can be directed to the Carer Skills Passport guide for ward managers and care managers on the Carer Skills Passport website, if necessary
• The ward manager or care manager may ask the parent, paid or unpaid carer to log on to the Carer Skills Passport website to verify their training and competency assessment
• The parent, paid or unpaid carer is given additional guidance, as appropriate, to ensure that they can provide safe care in the new care setting e.g. fire safety, emergency procedures etc.
• The ward manager or care manager explains the caring tasks the parent, paid or unpaid carer can safely continue to undertake in the new care setting. The ward manager or care manager also outlines any tasks which must be only undertaken by the unit staff. There may also be tasks which are undertaken in partnership with unit staff e.g. some medicines administration.
• The ward manager or care manager explains how the parent, paid or unpaid carer should document the care they provide in the new care setting.
• Paid carers may also need to demonstrate evidence of a satisfactory enhanced Disclosure and Barring service check (DBS) including checking for updates online.
• Paid carers may also need to sign an honorary contract.

Your Carer Skills Passport account includes your log in details and password. This is only ever accessible to you. The information in your Carer Skills Password account is important please keep it secure and do not allow others to log in using your details.

Your Carer Skills Passport profile page contains important information about you including a photo for identification and your contact details. If you are a parent, paid or unpaid carer it will include details of your accredited Carer Skills Passport training and assessment. If you are a care skills trainer it will include details of the Carer Skills Passport training you are accredited to deliver. Whether you are a parent, paid or unpaid carer, care skills trainer, continuing care commissioner or manager your profile details will be only accessible to you and specific members of the Carer Skills Passport team. If someone else needs to verify your accredited Carer Skills Passport training and assessment you should log on to the Carer Skills Passport website yourself and show them your profile page. Don’t forget to log off afterwards. NEVER give other people access to your log on details or allow other people to log on to your Carer Skills Passport account. If you are a Carer Skills Passport accredited trainer you can choose to make your Carer Skills Passport profile available to others in the Carer Skills Passport Directory of Accredited Trainers but this is entirely voluntary.  

The carer Skills Passport website is protected by a secure firewall to keep your data safe. Information from the carer skills passport website is backed up regularly. We also keep a separate secure backup copy of carer skills passport membership and training details.

A Carer Skills Passport Expert Parent or Expert Patient Advisor is a patient or parent with considerable experience of living with or caring for someone with a complex long term condition, for example a parent of a teenager with cerebral palsy, who has been invited by the Carer Skills Passport team to become a member of the faculty. Carer Skills Passport Expert Parent or Expert Patient Advisors play a key role in co-designing and co-delivery of Carer Skills Passport training. Unfortunately at present we cannot pay our Expert Parent or Expert Patient Advisors for their time but we are able to reimburse travel and other out of pocket expenses.

Parents and patients who are interested in becoming Carer Skills Passport Expert Parent or Expert Patient Advisors can apply online. Alternatively contact us on info@carerskillspassport.org.uk if you wish to discuss with a member of the team.

Carer Skills Passport training is designed and delivered as a partnership. Expert parents, expert patients and professionals are working together to

• Raise awareness of the Carer Skills Passport through parents, paid and unpaid carers as well as professionals
• Identify and prioritise parents’, paid and unpaid carers’ training needs
• Identify the best ways to deliver training and updates, ensuring that training is accessible, relevant and effective
• Co-design training modules, ensuring the learning needs of all participants are met
• Deliver training as a partnership, ensuring consistency, facilitating shared understanding and increasing awareness of perspectives of others involved in caring for the same child or young person

Professionals need to have significant clinical experience in caring for a variety of children and young people with similar needs over a number of years before they can become Carer Skills Passport Trainers. We recognise however that some family members want to be able to train up other family members to care for their child. The carer skills passport team is keen to help families share the care of their child in the same way that they would for healthy children. We are looking into ways of facilitating this. However at present we recommend that family members do not train other people without specialist advice, even if it is just for the care of their own child.