Privacy Notice Policy: Care Services
Children, Young People, Family Members and Carers

This notice applies to the children and families that are the beneficiaries of services provided by Claire House.

About us

Claire House Children’s Hospice (Claire House) is a charity that is very much part of the community we serve. We take our Data Protection responsibilities very seriously, with regard to the personal data that is shared with us. We promise to keep this safe and secure and only use it for the purposes for which it was collected and not do anything that would not be reasonably expected or is not allowed under legislation.

For Data protection requirements * the data controller is Claire House Children’s Hospice, Clatterbridge Road, Bebington, Wirral, CH63 4JD. This is also our registered office.

Our registered charity number is 1004058.

Our ICO Data Controller registration number is: Z5857396

 

Our commitment

We are committed to protecting and respecting the privacy of every child and young person and their family members and/or carers who have been referred to and are accessing any of the Claire House Care Services.

Throughout this policy the term ‘you’ will be utilised to refer to a ‘child, young person, a family member(s) and /or carer. We accept and recognise that for the majority of children and young people this information will be provided by their parent /carer /other. This may also include young adults in line with Mental Capacity Act (2005), who do not to have capacity to make decision for themselves.

This notice (together with any other documents referred to in it) sets out the basis on how any personal data we collect from you, or that you provide to us, or that we obtain about you will be processed by us.

Please read the following carefully to understand our views and practices regarding your personal data and how we will treat it.

This privacy notice explains the following:

• What information Claire House may collect about you
• How we will use any information we have collected from you
• When Claire House may use your information to contact you
• Whether Claire House will disclose your information to anyone else
• Your choices regarding the personal information you have provided to us
• How long the data we hold about you will be retained and how it is securely disposed of

We are committed to safeguarding your personal information. Whenever you provide information such as this, we are legally obliged to use your information in line with all laws concerning the protection and security of personal information, including the UK General Data Protection Regulation (UK GDPR), the Data Protection Act 2018 and the Privacy & Electronic Communications Regulations (PECR Directive)
2003.

Scope

This notice applies to the children and families that are the beneficiaries of services provided by Claire House.

This privacy notice explains what personal data (information) we hold about you, how we collect it, how we use and may share information about you during your care or treatment by us. Please ensure that you read this notice and any other similar notice we may provide to you from time to time when we collect or process personal information about you.

Your Data Protection rights

You have certain rights in relation to your personal information, although those rights will not apply in all cases or to all the information that we hold about you. For example, we may need to continue to hold and process information to establish, exercise or defend our legal rights.

You have the right to be informed about how we use the data you provide. We will try to be as transparent as possible in our interactions with you. Any time you give us personal information you have a right to be informed about why we need it and how we will use it. You can find most of the information you need in this Privacy Notice.

You have right of access to any of your personal data that we hold about you. You can contact us at any time to gain information about what data we hold about you and why we hold it. If you make a formal request, for example via a solicitor acting on your behalf, we will respond to this as detailed in the Healthcare Records Creation Management Storage and Destruction Policy by acknowledging your request and will first require you to prove your identity. We may also ask you for more details about any specific information you are seeking to help us make sure we meet your request fully and speed up the process.

If you agree, we will try to deal with your request informally, for example by providing you with the specific information you need over the telephone. We will provide you with the information that you are entitled to as soon as possible and without unreasonable delay and at the latest within one month of your identity being verified by us.

In exceptional cases we may extend the period of compliance by a further two months if the request(s) are complex or numerous. If this is the case, we will inform you within one month of the receipt of the request and explain why the extension is necessary.

In most circumstances there will be no charge for this right of this access.

You have the right to have any personal data we hold corrected at any time if you believe it to be inaccurate e.g., the spelling of your name or your contact information.

You also have the right to ask for our processing of your personal data to be restricted. For example, if you are contesting the accuracy of data, we are using about you. In such case we will restrict our processing while we verify the accuracy of the data that we hold.

You can also ask for certain information about you to be deleted. For example, if you are moving out of the area.

In certain cases, we will be unable to delete your information if there are statutory grounds to retain it (i.e., HMRC or other legal requirements).

You have the right to data portability where processing is automated, although we do not currently carry out any such processing. If we do in future, you can make a request and this data can be exported from our systems for you.

You have the right to ask us not to process your personal data for marketing or profiling purposes.

You can exercise your right to prevent such processing by checking certain boxes on the forms we use to collect your data. You can also exercise the right at any time by contacting us at either the Data Protection Lead or our Caldicott Guardian by email at informationofficer@clairehouse.org.uk. or alternatively at the following address:

Information Officer
Claire House Children’s Hospice
Clatterbridge Road,
Bebington,
Wirral,
CH63 4JD

 

Who collects the information?

Claire House Children’s Hospice (Claire House) is a ‘data controller’. We are committed to being transparent about how we collect and use that data and to meeting our data protection obligations. When you engage with us to access and utilise any Claire House services, we will gather and record information about you, your medical treatment and family background. This will be on our electronic data systems or on paper records. This is done to help us care for you in the most effective way that meets your individual needs. We will comply with data protection principles when gathering and using your personal information, as set out in this notice.

What information do we collect?

To provide you with the highest quality care, Claire House collects information about you, your health and the care given to you or planned to be given to you. This information may include:

1. Your full name, including any previous name (e.g., maiden name) if applicable
2. Your date of birth, NHS number, address, telephone number and email address – where you have provided it to enable the Hospice to communicate with you by email or text
3. Your next of kin and emergency contact details
4. Details of your previous hospital appointments, A&E attendances, home visits and hospital admissions
5. Letters, referrals, notes and reports about your health from other providers such as your GP or other health/social care professionals
6. Details of the care, treatment or support you have received, including investigations
   (laboratory tests, scans and x-rays) and details of any treatments or procedures you have undergone and the professional opinions of those caring for you
7. Information on the medicines we give to you including any allergies you may have
8. Information from those who know you well, such as family members or carers
9. Information about who has parental responsibility for a child or young person
10. Safeguarding Information in relation to your child or family

Where required we may also record information on your religion, ethnicity, disabilities and sexual orientation, in order to ensure the Hospice can meet your specific needs within these areas (spiritual care, language preference and translation services, dietary needs etc.). This is classed as ‘special category data’.

What other information do we collect?

To preserve safety, there are observational CCTV cameras situated in all children’s bedrooms. The camera images are routinely used during the night-time to enable our staff to observe patients for safety reasons, for example if the child/ young person has nocturnal seizures or is a light sleeper and to avoid multiple physical room checks through the night which are likely to impede a restful sleep. The CCTV monitoring is observational only, no recordings are made or held and images can only be viewed at the main nurse station(s). They are turned off when not required or prior to undertaking any personal cares. Access to view images is restricted to key care staff. Those with capacity to do so, can refuse to have the cameras on if they understand the potential risks involved.

Claire House also operates a separate Closed-Circuit Television (CCTV) surveillance system (“the system”) throughout the Claire House premises with images being monitored and recorded. The system is owned, operated and managed by Claire House. It is used for maintaining public safety including for the safety of staff, patients and visitors, the security of property and premises and for the detection, prevention and investigating of crime. Disclosure of recorded material will only be made to third parties in accordance with the purposes of the system and in compliance with Data Protection legislation. We do not collect more information than we need to fulfil our stated purposes and will not retain any recorded images for longer than is necessary.

Why do we collect patient information about you?

In order to support your care, care and support service staff at Claire House will maintain records about you. Your information is vital in helping the Hospice to:

1. Record your personal demographic details and contact information
2. Provide care professionals with accurate, up to date information for assessing your individual needs and making decisions with you about your care, treatment and support.
3. Record details of our contact with you to provide professional, integrated care and to avoid duplication
4. Ensure your care and treatment is safe and effective
5. Share with other professionals involved in your care as required
6. Ensure any concerns or complaints you may have can be investigated
7. Provide external commissioners of Claire House services with required information for agreed service contracts

This information is also available should you:

1. See any other healthcare professional
2. Move to another area
3. Need to use another of our services (for example Counselling) or a partner service.

Why do we collect information about family members, carers and others who are important to you?

We record names and contacts details about family members, carers and others that you identify as important to you in order to:

1. Keep them informed of changes in your situation (unless you ask us not to)
2. Ensure they are involved in planning that might affect them as well as you (e.g., if we were arranging for health or other professionals to visit you at home, or for equipment to be delivered)
3. Offer support, including emotional and psychological support and counselling, if needed
4. Offer bereavement support and attendance at remembrance events if you were to die
5. Data from the hospice may be shared with our Fundraising team with your permission or consent and stored on the Fundraising database. This helps us to determine who we send any Hospice event updates etc. to, and more importantly, who not to contact. Data is not shared with external parties, except those who act as data processors for us in order to produce marketing or event updates e.g., print and fulfilment companies.

National data opt-out

The national data opt-out is a service that allows patients to opt out of their confidential patient information being used for research and planning. Further details can be found here digital.nhs.uk/services/national-data-opt-out. Claire House complies with the National data opt-out policy, you would need to inform us if you or your child has registered for the National data opt-out.

 

How does the Hospice keep your information safe?

Data will be stored in a range of different places, for example in our secure management systems, patient database and in other IT systems (including the email system) and paper records.

We take great care to ensure your information is kept securely and that it is up to date, accurate and used appropriately. All of our Claire House staff are trained to understand their legal and professional obligations to protect your information and will only access your information if they need to. Staff will only look at what information they need at that time in order to do things like arrange respite, day care, visit you at home, give palliative care advice. This may include making internal referrals to for e.g., counselling, music, and complementary therapies, physio, OT or aquatic services.

All staff working for the Hospice have a legal duty to keep your information secure and confidential. We do this by having policies and procedures in place which act as guides for our staff and volunteers. Any breach of your personal information is treated seriously and may involve an investigation with the objectives of preventing another such breach. Staff who do not follow Hospice guidance may face disciplinary action including dismissal.

The Hospices’ computer systems and networks are protected against viruses, hackers and unauthorised access. The Hospice has strict rules about who has access to specific systems. Any information about you that is sent externally is sent securely electronically (encrypted). The majority of our electronic systems are able to create an audit trail every time someone access your information.

The Hospice uses Data Protection Impact Assessments (DPIA) to identify and address any data protection issues that may arise when developing new products or services or undertaking new activities which involve the processing of personal data. The Hospice uses Information Sharing Agreements to control the way your information is shared with other partners. All personal information that is stored outside the Hospice’s IT systems must undergo Due Diligence to ensure that the transfer and storage of your information by our partners is secure.

The Hospice has appointed a Caldicott Guardian, who is the Director of Clinical Services, and they are responsible for protecting the confidentiality of patient information and enabling the appropriate sharing of information.

The Hospice has also appointed a lead Information Governance officer who is responsible for facilitating accountability within the organisation and ensuring the Hospice is able to demonstrate its compliance with the GDPR.

Each year the Hospice is required by the Department of Health to complete the Data Security and Protection Toolkit where our security and confidentiality compliance are assessed against national standards required by NHS Digital and the Care Quality Commission.

 

What is our legal basis for collecting your data?

The Hospice will process your personal information fairly and lawfully by only using your information if we have a lawful reason to do so.

We must have a lawful basis for processing your information; this will vary on the circumstances of why we process and how we use your information, but typical examples include:

1. You have given consent for us to process the information e.g., in relation to certain support and fundraising events,
2. The legal basis for the majority of our processing is that it is necessary for a contract we have with the individual (e.g., to provide care for a child), or because they have asked you to take specific steps before entering into a contract,
3. The processing is necessary for compliance with a legal obligation to which we are subject e.g., we must provide certain contact information and other details about our services to HMRC and the Charities Commission,
4. To protect vital interests e.g., the processing is necessary to protect someone’s life
5. The processing is necessary for us to perform a task in the public interest or for our official functions, and the task or function has a clear basis in law,
6. The activities are within our legitimate interests as a charity that provides hospice care for children and young people.

Claire House’s primary lawful bases for processing your data are:

(d) Vital interests: The processing is necessary to protect someone’s life. The data we process is partly in relation to vital interests in terms of the protection of life.

(f) Legitimate interests: The processing is necessary for your legitimate interests or the legitimate interests of a third party, unless there is a good reason to protect the individual’s personal data which overrides those legitimate interests. We are processing care data to provide direct care and support as part of our primary function as a hospice.

Where the data we process includes any personal data, classed as ‘special category data’ revealing any of the following, we must have a further lawful basis for the processing:

1. racial or ethnic origin
2. political opinions
3. religious or philosophical beliefs
4. trade union membership
5. genetic data
6. biometric data (where used for identification purposes)
7. health related data
8. data concerning a person’s sex life and
9. data concerning a person’s sexual orientation

The lawful bases for processing special category data may include:

1. 1. Explicit consent
   2. Employment, social security and social protection (if authorised by law)
   3. Vital interests
   4. Not-for-profit bodies
   5. Made public by the data subject
   6. Legal claims or judicial acts
   7. Reasons of substantial public interest (with a basis in law)
   8. Health or social care (with a basis in law)
   9. Public health (with a basis in law)
   10. Archiving, research and statistics (with a basis in law)

In this instance, our lawful basis for processing your data is Article 9 (2):

h. Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of English law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 2.

We will comply with the data protection legislation by:

1. Only using your information for the purpose, it was specifically collected and not use it for other purposes
2. Only use your information if it is adequate and relevant to deliver your care
3. Ensuring your information is accurate and up to date and if found to be wrong, we will correct it, where appropriate
4. Only keeping your information for as long as we are legally required to do so
5. Ensuring we have appropriate security measures in place, including measures to protect against unauthorised or unlawful processing and against accidental loss, destruction or damage.

Where do we get information about you from?

In additional to the information that you, your family and any carers give to us, we often obtain information from:

1. The health care or other professional(s) referring you to our service
2. Records of investigations (e.g., imaging, biopsy and blood results), clinic letters and discharge summaries available electronically from local and mainland hospitals via their secure electronic information systems for e.g., EMIS
3. Other professionals already involved in, or who can give help and advice about your care.

What happens if you do not need regular contact from us for a while?

If your care with us has been completed, we will talk with you about discharging you from our care. This means that you no longer appear on our open caseload of children and young people, but we could still retrieve your notes if you were referred back to us at any point in the future. We do this by keeping your records on our database or at our secure Claire House records archiving service as per our Healthcare Records Creation Management Storage and Destruction Policy.

 

When is your information shared?

The Hospice has a statutory duty under the Health and Social Care Act 2012 to share information about you where it is necessary for the purpose of providing you with direct care. Your personal information will be shared within the Hospice among our multi-disciplinary teams that are involved in your direct care. These could include:

1. Medical staff, nursing staff and allied health professionals (doctors, nurses, physiotherapists, occupational therapists’ counsellors, etc.)
2. Social care professionals if there have been safeguarding concerns raised as per the local authority safeguarding policies and procedures
3. Specialists involved in the analysis and reporting of your diagnostic tests
4. Administration staff
5. Staff conducting audits to evaluate the care provided to you. Only anonymous information is used in any such reports.

We will also share your information with your GP and/ or other health and social care professionals who are providing care or support for your child and who need information so that they can plan the best ongoing care and support when we transfer your care. We will also share relevant information with ambulance and other emergency services as required.

The Hospice and other agencies work together to provide you and your carers with the most appropriate treatment and support. Appropriate data sharing agreements will be in place if information is to be shared directly and through digital record sharing systems.

We may also share information as required/ requested with:

• Commissioners of services
• Care Quality Commission (CQC)
• Other NHS Services
• Community Service Providers
• Social Services
• Local Authorities
• Voluntary Services
• Private Healthcare Services
• The Police
• Education Services

Your care will sometimes be discussed with other professional colleagues to ensure that your care is co-ordinated and/or to obtain further advice from other team members (e.g., doctors, occupational therapists, pharmacists, physiotherapists, psychologists, nurse specialists, counsellors, dieticians, chaplains, social workers, patient equipment and transport services etc.).

We will only use or pass on information about you to other health and / or professionals to support your care. If we feel that it is in your best interests to share your information with someone else e.g., Social Care or a Voluntary Organisation that could support you in other ways we will ask your permission to do so. Everyone who has access to your information is required by Law to keep it confidential. We will not disclose your information to anyone else without your permission unless in exceptional circumstances e.g.:

1. safety was at risk (e.g., risk of suicide, concern for the safety of a child, yourself or another adult etc.) or if we were required to share information by law (e.g., a notifiable infectious disease, a court order etc.)
2. you were unable to give permission (e.g., in a coma or disorientated). We would then make a best interests decision based on any wishes or views you had previously given us, and the views of any family, carers, or others you had identified as important to you (unless you had previous directed us not to discuss you care with them)
3. if required by regulators (e.g., the Care Quality Commission, the Controlled Drugs Local Intelligence Network, the Medicines and Healthcare Regulatory Authority etc.)
4. Where we are required by law to do so, for example the prevention and detection of crime, the apprehension or prosecution of offenders, and the assessment or collection of tax. In such cases you may not be informed that this has happened.

 

How your records are stored

Like all healthcare providers Claire House uses an electronic clinical records programme to store your personal information. We also hold a small amount of information on paper (e.g., medication prescriptions, summaries of care and information required in the event of an electrical failure etc. when the electronic system cannot be accessed).

 

Can my information be used for any other reason?

Claire House participates and contributes to efforts by the NHS, for example patient survey programmes and Care Quality Commission to use your information in an anonymous and safe way to:

• protect the health of the public
• help us anticipate, plan and provide care
• audit, review, monitor and evaluate the quality of services we provide.

Information used for these purposes will not identify you but if you would like further details about this, or if you do not want us to use your information in this way, please contact the Claire House Information Officer at informationofficer@clairehouse.org.uk.

 

Retention of records

Records of clinical care now often inform future clinical decision making, for example, responses to medication such as allergies; diagnoses that might recur in the future. Therefore, your details will be held on our systems after you have been discharged from Claire House in line with Claire House Records Retention Policy so that your patient record can be shared across various services in the event that it needs to be accessed by other professionals to ensure decisions about any future treatment are informed.

 

What happens after someone dies

Electronic and paper records are kept for the required period in line with Claire House Records Retention Policy. Families often tell us that it can be upsetting when hospitals and others continue to try and contact their loved one after death. Therefore, if a child or young person dies for whom Claire House has provided direct care, we will notify others involved in their care. This also includes our regulatory requirement to notify all deaths to the CQC and to the relevant Child Death Overview Panels via their secure digital reporting systems. We also ensure that if the child / young person who had died had previously been on our fundraising database, their details are updated accordingly.

 

Change of Details

It is important that you tell the person treating you if any of your details such as your name or address have changed or if any of your details such as date of birth is incorrect in order for this to be amended. Please inform us of any changes so our records are accurate and up to date for you.

 

Complaints

Claire House tries to meet the highest standards when collecting and using personal information. For this reason, we take any complaints we receive about this very seriously. We encourage people to bring it to our attention if they think that our collection or use of information is unfair, misleading or inappropriate. We would also welcome any suggestions for improving our procedures.

This privacy notice was drafted with brevity and clarity in mind. It does not provide exhaustive details of all aspects of Claire House’s collection and use of personal information. However, we are happy to provide any additional information or explanation needed. Any requests for this should be sent to informationofficer@clairehouse.org.uk.

If you believe that Claire House has not complied with your data protection rights, you can complain to the Information Commissioner’s Office. Their address is
Wycliffe House,
Water Lane,
Wilmslow,
Cheshire SK9 5AF
or by calling 0303 123 1113.

Changes to this notice

This privacy notice may be updated from time to time, so you may wish to check it each time you submit information to Claire House. The date of the most recent revisions will appear on this page. We will notify you of any major changes by placing a notice on the website and the parents Facebook pages or by contacting you directly.

* Data Protection Requirements means the Data Protection Act 2018, the UK General Data Protection Regulations, Common law duty of confidentiality, the Regulation of Investigatory Powers Act 2000, the Telecommunications (Lawful Business Practice)(Interception of Communications) Regulations 2000 (SI 2000/2699), the Electronic Communications Data Protection Directive 2002/58/EC, the Privacy and Electronic Communications (EC Directive) Regulations 2003, the Privacy and Electronic Communications (EC Directive) (Amendment) Regulations 2011 and all other applicable laws and regulations relating to processing of personal data and privacy in any applicable jurisdiction as amended and replaced, including where applicable the guidance and codes of practice issued by the UK Information Commissioner or such other relevant data protection authority