Residential Care or Care at Home We have put together some things to consider when supporting the care of someone with a diagnosis of Addison's disease or adrenal insufficiency who is living in a residential care environment, or who is receiving support with their care at home, from an agency. Please note that we are working to develop further resources to support relatives, residential home owners and staff, and agency owners and staff, in collaboration with the Pituitary Foundation. Unfortunately, due to our small team, and the number of projects we are engaged in, progress can be slow. What we have collated below is the information we are able to share at this time. Background With a general move towards supporting people in their own homes, and a reduction in services such as District nursing services, care agency carers are picking up more and more Delegated Healthcare tasks (DHCTs), that is, activities, usually but not exclusively of a clinical nature, that a regulated healthcare professional delegates to a paid care worker or personal assistant. These range from medication management (prompting, reminding) to stoma care, peg feed care etc. There is no statutory requirement for social care providers or care workers to undertake delegated healthcare activities and delegation must be in the best interest of the person. When making a decision about what tasks can be delegated from a healthcare professional to a care agency carer, consideration must be made of supervision, review, training etc. The regulated healthcare professional delegates to specific care workers, rather than to the provider organisation as a whole. It is the responsibility of specific social care workers and the social care provider to ensure the social care workers are competent to carry out the healthcare activity delegated to them, and be able to demonstrate sufficient evidence of learning and development and support to the required standard. Understanding Addison's Disease and Adrenal Insufficiency Living with Addison's and adrenal insufficiency can present unique challenges, particularly when it comes to providing an optimal care environment for someone who has additional care needs, or requires support to manage daily activities around personal care or practical tasks in the home. Are Addison's and adrenal insufficiency disabilities? Adrenal insufficiency, including Addison's disease, is a rare condition and an invisible disability. People with Addison’s and adrenal insufficiency are covered by the definition of disability under the Equality Act 2010, or if you live in Northern Ireland, the Disability Discrimination Act 1995. This is because they are life-long conditions that can seriously affect a person’s ability to do normal day-to-day activities and are fatal if left untreated. It is important to note that not everyone with Addison's and adrenal insufficiency will identify as having a disability, and not everyone will want to share their diagnosis with their employer or colleagues. Common Challenges we hear about We are frequently contacted with queries relating to people who are resident in long term care, or are receiving support with their care from an agency coming into their home. These queries tend to centre around Managing emergency injections and adrenal crisis Managing Sick Day Rules We are asked about: Who can and should give an emergency injection? Who can and should support updosing in line with Sick Day Rules? Whether a risk of adrenal crisis means someone should receive nursing care rather than residential care? How to understand low cortisol symptoms if an individual is not able to clearly communicate how they feel, or when they feel unwell. We are not in any position to give individual advice relating to a specific care situation. Decisions need to be made by those directly involved in someone's care, taking into account their individual health needs, and in relation to a health needs and care assessment as appropriate. This should involve the individual themselves, any family/carers, key healthcare professionals, and those with a duty of care, all working together for the best health and wellbeing outcomes. The points we note here are what we are able to share in general terms about the management of adrenal insufficiency, including Addison's Disease, and the management of adrenal crisis. Remember best practice principles: Consideration and assessment of individual needs. Clear and transparent communication, including the person with adrenal insufficiency, their families/carers and healthcare professionals. A willingness of all parties to discuss to reach a practicable and reasonable outcome that meets the needs of the individual with adrenal insufficiency. Regular review with assigned responsibilities and timescales for action points. Adrenal insufficiency, including Addison's disease, and adrenal crisis A diagnosis of any form of adrenal insufficiency carries with it an inherent risk of adrenal crisis, a life-threatening emergency that requires time-critical treatment with an emergency hydrocortisone injection. For information on adrenal insufficiency and adrenal crisis including symptoms and triggers, please see the relevant webpage links below: The emergency hydrocortisone injection to prevent and treat adrenal crisis Patients with a diagnosis of Addison's (or other forms of adrenal insufficiency) should have access to at least one emergency injection kit (in line with NICE Guidelines for the Identification and Management of Adrenal Insufficiency, 2024) and a prescription of hydrocortisone sodium succinate powder for injection, plus diluent. An adrenal crisis is a time-critical emergency and in a 2025 study by Dr S Llahana, of over 500 patients with adrenal insufficiency, early administration of the injection showed a reduction in hospital admission. Unfortunately, it is not a simple or easy process to prepare the injection, particularly whilst experiencing symptoms of adrenal crisis, so it is common that someone may need support to prepare and/or administer this injection. Considerations: The individuals ability to recognise when they need an injection The individuals ability to prepare or self-administer an injection The injection is considered a delegated healthcare task and as such needs to be assessed on a case-by-case basis Care provision is tightly regulated by the CQC (Care Quality Commission) and training of agency staff is required to show competence across areas of care provided. Where delegated healthcare tasks are being done by carers, they need to be trained and 'signed off' as competent. It is often difficult to find someone to carry out training on how to give an emergency injection with care agency or residential home staff Staff turnover and rotas can mean it is difficult to have someone competent available even if training is provided It is difficult to find someone to sign off on the competency of staff even if support has been found to provide training Insurance policies may not be 'supportive' of staff administering the injection. Does the patient have family who live close by and want to be called in an emergency to administer the injection Is there an endocrine nurse team who supports the patient and would offer training or sign off on training? There is no risk of overdose from hydrocortisone in an emergency situation or for short term use but an untreated adrenal crisis is fatal. As such if adrenal crisis is suspected, the advice is to inject to prevent a crisis, erring on the side of caution. In the community, and whilst family members, friends, colleagues or even members of the general public may end up preparing and administering an injection in a non 'residential/care setting', it is clearly more complex in the case where there is a duty of care involved. As a result, the advice in these situations, where adrenal crisis is suspected is: Call 999 and ask for an ambulance. Use the keywords 'adrenal crisis' and 'steroid-dependent' Adrenal crisis is given a category 2 priority with paramedics, who carry hydrocortisone with them. Paramedics will administer the emergency injection of hydrocortisone and take the patient into hospital for monitoring and fluids. Preventing adrenal crisis Much can be done to support optimal management of the individual's adrenal insufficiency to prevent adrenal crisis where possible. Carers, whether in a residential care home setting, or working to support someone in their own home, are in a powerful position to prevent and provide early detection of adrenal crisis This involves: Understanding how low cortisol symptoms present in an individual (not everyone is the same) Understanding and ALWAYS following the Sick Day rules in the situations where they are recommended Exploring an individual's personal adrenal crisis history and low cortisol symptom patterns with them and/or their family, to better understand their individual triggers. Acting in a timely manner to low cortisol symptoms - and erring on the side of caution. What next? We are currently looking to build some training materials around: Better understanding of adrenal insufficiency and its management Time critical medications Sick Day Rules Adrenal crisis triggers and signs/symptoms Unfortunately we don't have these in a format ready to share and support staff training yet. If you are interested in helping the ADSHG and The Pituitary Foundation to build training materials that will answer the questions you have, and suit your needs, then reach out to [email protected] Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! Join the ADSHG Connect on social media! Follow us on X/Twitter, Bluesky, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube. Manage Cookie Preferences