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is supported to plan for their future and is involved in assessments and in developing a comprehensive plan which reflects their wishes. Every young person has both an end of life care plan and plan for ongoing care and support in adult services. Children’s and adult services will work together to ensure smooth transition. Young people and their family are supported in adult services with a multi-agency team and given honest and realistic advice about what they can expect in terms of how their care and support needs will be met in the future. Partnerships working between children’s and adult… hospices are beginning to play more of a role with young adult people, they may not offer the range of support, services, therapies and short breaks that you are used to. Make sure you have parallel plans that will both help meet your child’s needs and wishes should their condition deteriorate as well…

When a person receives a terminal diagnosis it can create a wide range of emotions for them and you as their family carer. You and the person may feel angry, may feel it is unfair, may feel sad, shocked, or in denial. Living with a terminal illness can sometimes make family relationships difficult, but it can also bring you closer together. The doctor and healthcare team should be honest with the person and you as their carer about what the diagnosis means, the prognosis, and what the treatment options are. This includes explaining any medical terms in plain language. They should give all the information the person needs to make a decision about treatment and explain the advantages and disadvantages of each treatment option, including any potential risks and side effects. The doctor can recommend treatment but should not pressure the person to accept it. The doctor should also…

Equipment Equipment can be bought directly from a specialist supplier or household shop without an OT assessment. This might include more minor equipment items such as a raised toilet seat, pressure mattress, bath hoist, over bed table, wheelchair, crutches, or a hospital style bed. If not having an OT assessment it is best the person tries it out first either as a trial period in the home or the store, particularly if it is an expensive item. You, as the carer, also need to ensure it is safe to use and not putting your own health at risk. If the equipment proves helpful you can still arrange for a social care assessment to see if the person would be eligible for financial help. Equipment such as a hospital bed, mattress, or commode can be provided by your local community nursing team. The person’s GP can make a referral to the nursing team and they will come to the home to assess…

Whilst the person you care for is still able to swallow, tablets or liquid medicine will continue to be prescribed by their GP. If the person wishes you to help administer their medication then make sure you are giving the medicines at the right time of day. If you are giving them at the wrong ti…

influenced the course of your life. If you are a grandchild you can let your grandparent know how much they have meant to you. If you are a friend you can talk about how you have valued years of support and friendship. Family and friends who can’t be present could send a recording of what they would…

moments you may want to ask another member of the family or a friend to join you. Or there may be a faith leader that you would like to come and support you. …

A Lasting Power of Attorney (LPA) allows the person you care for to give someone they trust, such as you as their carer, the legal power to make decisions on their behalf if they lack capacity to make those decisions for themselves. The person making the LPA (the person you care for) is called the ‘donor’ and the person they give the power to is called the ‘attorney’. The attorney must be 18 years of age or over and the ‘donor’ must have mental capacity to consent to setting up the LPA. There are two different types of LPA: An LPA for Property and Financial Affairs gives legal power to the attorney to manage the person’s money and property. This includes managing bank accounts, selling a property, or collecting benefits. An LPA for Health and Welfare gives legal power to the attorney to manage the person’s health and care and includes medical decisions, where healthcare…

decisions about the person’s treatment and care. If you are not the person’s attorney, health professionals have a legal obligation to speak to you as their carer/relative to make decisions about what is in their best interests in relation to their future care. They should listen to your views…

Organs can only be donated if the person you care for dies in hospital, usually in intensive care where the blood can be kept circulating. However, tissue (such as bone, skin, heart valves, corneas, and many others) can be donated up to 48 hours after a death which does not necessarily occur in a hospital. Up to 50 people can benefit from tissue donated from just one person. From spring 2020 the law around organ donation changed. All adults in England will be considered to have agreed to organ and tissue donation when they die unless they have recorded a decision NOT to donate or are in one of the excluded groups. If the person you care for does not want to be an organ donor they will need to opt-out by registering a ‘refuse to donate’ decision on the NHS Organ Donor Register and by sharing their decision with you. It’s important they tell you what they want, as the family…

a deputy is often a carer, relative, or friend, in some circumstances it could be a professional such as a solicitor, accountant, or another professional felt to be appropriate by the Court of Protection. To be a deputy you do need to be 18 years or over and agree to be a deputy. It’s also possible…