Suffolk People first conference NHS England talking about STOMP and Ask Listen Do Anne Webster and Carl Shaw 02/03/2018

STOMP Stopping Over Medication of People with Learning Disabilities Autism or both We are here to introduce STOMP – stopping over-medication of people with learning disabilities, autism or both. This is a project that is about making sure that people are not given more medication than they need because this can be harmful. STOMP focusses on psychotropic medication – this is medication that affects your mind. This includes your ability to think, your mood and your consciousness.

What do people take medication for? Carl How many people here take medication? Medication affects everybody. I’m not asking you to share personal information. In general, what sort of things do people take medication for? If people take the right medication it can help them feel a lot better.

Carl What do you think is wrong with this man? Do you think he’s happy? He feels so frustrated he feels like she’s about to explode. What do you think he is going to do? Sometimes when people feel like this they throw things, break things or hurt themselves or other people. Some people are given medication for feelings like this. Do you think that if this man had the right help he could learn to manage his feelings better? I know that, with good support, people can learn how to get what they need so they don’t get as angry and frustrated as this man. But if he doesn’t get this support and just takes medication to make him calmer, he will never learn how to live a happy life.

Side effects Carl Side effects are bad things that can happen to you when you take some types of medication. The sort of medication our angry man would be given may make him put on a lot of weight.

Side effects Carl This would be bad for his heart. This sort of medication can also make people very constipated. This can be treated but sometimes staff don’t realise how unwell people are feeling. If it isn’t treated people with learning disabilities can die of constipation.

Side effects Carl Medication can also make it more difficult to think clearly. This means that it can make people’s behaviour worse not better. If people can’t think properly then they can’t learn and so they find it very difficult to change.

Research tells us that: 30,000 to 35,000 adults with a learning disability are being wrongly prescribed an antipsychotic, antidepressant or both. Anne In 2015 Public Health England estimated that, on an average day in England, between 30,000 and 35,000 adults with a learning disability are being prescribed an antipsychotic, an antidepressant or both without an appropriate clinical reason. This is enough people to fill a football stadium.

Anne STOMP is a campaign about making sure that people get the right support so that they don’t feel this bad and they don’t have to take medication. Organisations that sign up to the STOMP pledge promise to make sure that people are only taking the medication they really need. Organisations that have signed the pledge make a plan to show what changes they are going to make. The next slides explain some of the things the plan should cover.

Good support Anne Providers that have signed up to STOMP have promised that everyone will get the right support; this should help some people reduce their medication. This is Matthew. Matthew used to be in a secure hospital because his behaviour was so concerning. He was given too much medication and was often locked up. He was very unhappy. But now he has moved to a house in the community where he has good support. This has helped him stop taking so much medication. Matthew lives in a very calm environment, that helps him not to get stressed. His staff understand how he communicates. They give him lots of time so he doesn’t feel under pressure. Matthew also has a very busy life that is packed full of things that he loves to do.

A structured day Anne Matthew plays football, rides horses, walks dogs and has a voluntary job at his local football club. His days are structured so he knows what to expect. This makes him feel less anxious.

Involve people in decisions about their medication Anne Matthew’s medication was making him feel very poorly so he wanted to come off it. Because he has the support he needs this has been possible. Everyone should be involved in decisions about their medication. This is your right. 12/27/2018

Ask Listen Do Making concerns and complaints work for people with a learning disability, autism and families November 2017 Carl

What’s the difference Can you tell us what you think the difference is between a Concern Complaint Safeguarding Criminal act Carl Ask people to say ideas

What’s the difference Concern Complaint Safeguarding Criminal act Not knowing the answer When concerns aren’t listened to Being protected Breaking the law Concerned about someone’s state of mind Not being happy with a service Being neglected Being discriminated against Something that may not go ahead I would contact an advocate To prevent harm or abuse Domestic abuse Carl This is what Mersey Care Whalley have fed back

The aims of Ask Listen Do To empower people to speak up if there is a problem which affects their health or a loved one’s health To improve people’s understanding of how to raise concerns and complain To improve the way organisations ask then listen and act on complaints To do this with organisations in health, social care and education All of this will make it easier for people to have their voices heard Carl

When we asked people in Leeds, London and the NHS England Advisory group… People said Many said they didn’t know HOW to raise a concern or complaint, and WHO to complain to Many people didn’t know their rights People do not understand what happens next People can feel bullied and intimidated if they complain. Carl

Too little too late People felt that if organisations and services listened sooner, complaints would be easier to solve: ‘They should think of it as a conversation’ ‘We want to talk to someone before it becomes a complaint’ ‘I want to talk to a person, not a number’ ‘Sometimes it’s just about being able to give feedback or ask questions’ Carl ‘It’s a lot harder to complain or be listened to if you have a learning disability or autism’ ‘For somebody to understand and not feel like it’s a threat’ ‘When it’s about people’s safety, we need safeguarding to do more’

What do we want partners to commit to doing? Ask The person, their family or advocate know how to give feedback, raise a concern or make a complaint The organisation encourages people to do this Everyone knows when a concern or complaint is a safeguarding or a criminal issue, and what must happen. Anne

What do we want partners to commit to doing? Listen The organisation really listens to what has been said and is not defensive The organisation and staff have the skills to listen and understand what it feels like from the person’s perspective Anne

What do we want partners to commit to doing? The organisation does something positive about it in good time and tells the person what they are doing to put it right The organisation learns from the concern or complaint and changes things so the service can improve The organisation proactively looks at ways to improve by working with the people that use services, listening to and learning from their experiences Anne

What should happen next Can you think of ideas that would make the system better with regards to concerns and complaints? Anne and Carl