Family members have knowledge and expertise that they have acquired during a lifetime of knowing and loving a person. It is our role to listen to, value and respect family members. By working together, we can ensure each person has the right support provided by the right people in their life.
Our experience has shown that many families have support needs which may not be recognised or met.
Download the summer edition of The Circular, our newsletter for the families of people we support which contains useful and important information about the support that we provide.
We are doing all we can to support families through this challenging time. We’ve pulled together a range of information and resources to help you and your loved ones:
We have a Family Support helpline that you can ring on 020 3947 0933 that is staffed from 10am to 5pm Monday to Friday. You can leave a message out of these hours and someone will get back to you as soon as possible. Alternatively, please email email@example.com
We can help you to make an emergency plan and fill out a hospital passport.
Our CEO, Aisling Duffy explains how changes as a result of the easing of lockdown will impact the people we support, their families and our staff.
There are lots of ways that you can stay connected with your loved ones during the current restrictions. You can have a virtual meetup, whether that’s with Skype, Zoom, WhatsApp, FaceTime or the various other methods that are available.
Our Connect and Do workshops have moved online, visit our website for the weekly timetable of events or why not try one of these activities:
The law (the Mental Capacity Act) says that parents and carers can’t make medical decisions on behalf of the person they are caring for after they turn 16, unless they have a Deputyship order from the Court of Protection.
You can support your family member to make a decision themselves if they are able.
If they are not, you should be involved in a decision to treat them in their best interest.
However, in an emergency, a doctor can treat anyone without consent.
Each hospital has its own policy. Most say that those with disabilities can have one visitor if it would cause distress to them not to.
Check with your local hospital for more information.
Each hospital has a nurse or other professional who is in charge of supporting people with learning disabilities and/or autism. They are usually in the Safeguarding Team, or the Patient Experience team.
The Patient Advice and Liaison Service (PALS) can also help you if you have concerns or complaints. They can also offer advice.
You should be able to get information on either from the hospital website.
You can also fill out a Covid-19 Passport that will tell hospital staff what the person you care for needs.
The National Institute for Health and Care Excellence (NICE) has said that an individual having a learning disability and/or autism will not be a reason not to offer treatment to a person. However, lots of people with these disabilities have other conditions that may make treatment more difficult.
These are Do Not Attempt Cardio-pulmonary Resuscitation orders or Do Not Resuscitate orders.
These are documents that people keep when they do not wish to be kept alive by a machine, or have their heart restarted if it stops.
You might get asked if your loved one has one of these, or some people might assume that they have.
The decision whether to resuscitate should be made in the same way as any other medical decision. A doctor should make it with the patient if they can make that decision or with their family if they can’t. DNACPR or DNRs might be appropriate if someone has a long term illness, or will not recover properly if their heart is restarted. It is a difficult decision and isn’t normally one you’d be asked to make quickly.
You can speak to the PALS team or the Learning Disability team at the hospital if you need help to make the decision.
The symptoms are:
We may not always be able to tell when the people we care for have these symptoms, as they can’t tell us.
You know the person you care for better than anyone, so be mindful of any changes of behaviour that may show that they’re not themselves.
Our Family Support team aims to ensure that families have the support they need to live a good life. You can contact our Family Support helpline on 020 3947 0933 or email firstname.lastname@example.org