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Mandy Anderton is a Clinical Nurse specialising in learning disability and a hub Topic Leader. In this new blog, Mandy explains how they are using shared decision making and reasonable adjustments to implement a new care pathway, where patients with a learning disability needing to undergo a medical investigation can receive deep sedation within their own home.  Working with patients, carers, relatives, anaesthetists and others, the aim is to improve access to important medical investigations with minimal distress, where other avenues have been exhausted.  Health inequalities and barriers to care People with learning disabilities experience higher levels of physical ill health, yet they face serious health inequalities and have lower life expectancy, dying on average 25 years sooner and frequently from avoidable and preventable conditions [1]. An inability to express pain or general feelings of being unwell (or this resulting in behaviour described as challenging) can lead to delays or problems with diagnosis or treatment, identifying needs and providing appropriate care. People with a learning disability might struggle to engage with medical interventions due to lack of understanding or fear, whilst uncertainty amongst medical professionals about capacity and consent can all lead to further delays. People with learning disabilities often struggle to engage with diagnostic tests like having blood taken or having a scan. This can lead to delays in care and treatment and have an impact on health outcomes. Reasonable adjustments Under the Equality Act 2010, there is a legal duty for public bodies to make reasonable adjustments for people with a learning disability. Equality is not necessarily about treating everybody the same. Rather, it is treating a person with a learning disability in such a way that the outcome for that person can be the same. Reasonable adjustments can be put in place, for example prescribing small doses of oral sedation to reduce anxiety or undertaking desensitization and preparation work on an individual basis. But these things do not work for everyone and can take time (which is no use in urgent situations). Clinical holding is also not always appropriate to every situation or individual. Bringing diagnostic tests to the home Salford Care Organisation (part of the Northern Care Alliance) has started to explore the use of deep sedation in the home to support people to have essential investigations, with the additional option of an anaesthetic if needed. Perceived benefits of these changes to practice are earlier diagnoses and treatment of medical conditions. Both of which promote equality and reduce mortality and premature death for people with a learning disability. The general idea is that when blood tests or other diagnostic tests or procedures are required (scans can be tricky for people to engage with also), GPs would be able to refer direct to a dedicated anaesthetic clinic for this support. Mental capacity Healthcare professionals need to work within the Mental Capacity Act (2005) and if the patient’s capacity is in question, a Mental Capacity Assessment is undertaken. If the person is considered to lack capacity, then decisions will be taken in their best interest. This process will include relevant medical professionals, family, and carers. If the person does not have a family member or friend to advocate on their behalf, then an Independent Mental Capacity Act Advocate will be asked to join these discussions. Best interest decision-making Least restrictive options are always considered and often tried first– this might be desensitization work, longer appointment times, giving oral sedation, working up to possible clinical holding or deep sedation or anaesthesia if needed. Legally the person proposing the procedure is always the lead for best interest and capacity but others will provide significant input. It is likely there will be on-going meetings and different best interest decisions are made as different interventions are tried and considered. The best interest decision process will consider the pros, cons of each intervention, always starting with least restrictive option and working upwards if needed. The likely consequence of doing nothing will also be considered against risk of anaesthetic and distress to the person and weighed up against the risk of not treating a possible underlying health issue. Safety considerations and risk assessment Safety is our priority. Fiona Armstrong, Consultant Anaesthetist, developed a policy around the new approach and this contains a lot of the detail around how we manage risk. The policy was approved last year, and we have attached the document at the bottom of this page for anyone interested. Fiona has also shared some of the key safety features below: The patient has to be suitable. They cannot be a predicted high anaesthetic risk. This would include certain medical problems, anticipated difficult to manage airways, high BMI or previous problems with anaesthesia. The home has to be suitable – within 30mins blue light transfer of the hospital. The ambulance team also needs to be able to safety extract the patient from the location that sedation is administered. Anaesthetist and anaesthetic assistance, trained in transfer, attend with all kit to be able to safely administer oxygen, secure IV access, give supportive medications or provide a full anaesthetic should an adverse event occur. The patient’s vital signs are monitored as soon as sedation takes effect and for the journey. Full area for immediate administration of anaesthetic is set up at the hospital. Home visit occurs prior by the ambulance team to ensure suitability and plan number of staff/extraction kit. Patient’s support team are involved in the planning process of how, when and where sedation is administered to minimise distress and improve safety whilst medication takes effect. We are at the very early stages of exploring this as a care pathway and only two people have been through the process so far, both cases have gone smoothly. Many others have managed with oral sedation to make it to the carpark and have the deep sedation administered there and others are currently undergoing planning and the best interest process. Case study - John A gentleman with severe learning disabilities and autism, John has a longstanding fear of needles, medical professionals and environments. Blood tests, an echocardiogram and ultrasound scan were needed to help identify any underlying, and potentially serious, medical cause for his swollen ankles. Opportunities for desensitization had been exhausted and attempts to take blood with the support of regular oral sedation had proved unsuccessful. Working together and within the legislation of the Mental Capacity Act (2005), John’s family, support team and health care professionals from both general health services and the Adult Learning Disability Team came together to form an individualised plan, which would enable John to have deep sedation (with the option of a general anaesthetic if needed) in his own home before being safely transported to hospital for further care and treatment. Feedback I’ve spoken to both of John’s carers (he lives in 24-hour support) and his mother. His mother couldn’t praise the support enough, saying how much re-assurance it had given her knowing that his health concerns had been taken seriously and investigated. She is more reassured for the future and thinks the pathway should be available everywhere. John’s carers also felt it suited his needs well: “Fiona, the anaesthetist, went to his home and basically just worked within John’s usual routine, which was so important as John is also autistic and has very rigid routines that he needs to adhere to. John was totally calm and does not appear to have been adversely affected in any way at all. He went straight back to his usual self, following return from hospital, as if nothing had happened”. Chris Connell, Head of service (supported living), Aspire for Health and Intelligent Care and Support Reflections so far Resources are needed to make this into a recognised referral pathway with dedicated theatre time. At the moment, it happens a little ‘ad-hoc’ and people are fitted in when our anaesthetist can find gaps on theatre lists. Funding is currently being considered. Working collaboratively has been key, with clear coordination and on-going meetings to revisit decision-making where needed and agree fresh plans. The visit to give John deep sedation in his home was very carefully planned beforehand to help ensure it ran in line with his routines and had the very best chance of success. Listening to John’s carers and family were key in gathering information about how best to support him. The service is completely personalised, which works best for people with a learning disability. Sedation can be given in the home, where a person is most comfortable and relaxed and can fit around their usual routines. So far, we have seen people get the medical investigations they needed in a timely manner with little, if any, stress to themselves. I’m not sure how we would have moved forward for John without this process as we had exhausted all other avenues. We need to continue to connect with key stakeholders such as community teams and hospital specialists. To make sure they know the service exists and to consider it for patients who need investigations, where other reasonable adjustments have failed. [1] (Learning Disability Mortality Review Programme, 2020) Share your thoughts Do you or someone you care for have a learning disability? Perhaps you work in healthcare and would like to help reduce the inequalities experiences by people with a learning disability. What do you think about the approach described in the blog? Please share your thoughts by commenting below (register for free first) or contact us at [email protected]. You can also get in touch with Mandy directly at [email protected] to find out more about this work. Related content Nobody left behind: Improving the health of people with learning disabilities and reducing inequalities across primary care How can GP practices help improve health outcomes for people with learning disabilities? Interview with a Community Learning Disability Nurse CS008 V1 Home Sedation and Transfer Service for Patients with Complex Needs requiring Hospital investigations and treatment (002) (1).pdf

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