Supporting PWS Awareness Month – focusing on good mental health for people with PWS

May 5, 2021

Samsoor, an individual with Prader-Willi Syndrome (PWS) and a mild learning disability, moved in to Fletton Avenue, a specialist PWS service based in Peterborough, Cambridgeshire in October 2020.

Prior to moving into Fletton, Samsoor had lived with his parents and sisters in his family home. Samsoor’s Dad worked overseas, returning every three months, and at home, Samsoor had become increasingly aggressive towards his mum and two sisters.

Samsoor found it very difficult to control his emotions and would experience meltdowns on a daily basis. Although usually able to communicate his needs, when his emotions became heightened and someone tried to talk to him, it would escalate his behaviour.

It was felt that Samsoor would benefit from living in a specialist residential care setting, with a dedicated team that had the knowledge and experience to support him to manage his PWS, while also supporting him to develop important life skills and reduce any anxiety or behaviours, thus improving his overall wellbeing and quality of life.

At Fletton Avenue, the friendly, dedicated team takes a person-centred approach to support each individual with their bespoke needs. The focus is on inclusion and supporting individuals to engage in meaningful activities that develop their skills in areas they may be struggling with, as well as supporting them to become involved in their local community.

Following an assessment of Samsoor’s needs, Fletton was identified as being a good fit for Samsoor, due to the specialist nature of the setting and the compatibility of Samsoor with other individuals already living at the service.

Transitioning into the service to ensure a smooth transition into his new environment, Samsoor had several visits to the service which enabled him get to know and build a rapport with his key worker, as well as the rest of the support team and the other individuals living at the service.

While Samsoor is a very kind and friendly young person, in the early days after he moved in, he did display lots of behaviours, including destruction of property, targeting another supported individual, and shouting and being aggressive towards others.

At Fletton Avenue, the team work closely with Behavioural Practitioner, Helen Coleman, from Consensus’ Positive Behaviour Intervention Team, who works with them to plan and implement Positive Behaviour Strategies that help individuals to minimise any anxiety and behaviours and increase their quality of life.

After assessing Samsoor, Helen was able to identify that his behaviour was mainly being triggered by boredom, however, being just 18 years old and this being his first time living in a care setting, another important factor was that he was missing home. She recommended that as a first step, the team supported Samsoor with establishing regular visits with his family so that he would know exactly when he would next see them, which would help to ease any anxiety he was feeling.

The team organised for Samsoor to start having weekend visits to his family home. Because he would really look forward to the weekend and to seeing his mum, this had a positive impact on his wellbeing and his behaviour at the service.

Initially, the team didn’t make any further changes to his routine as they were conscious not to overload him with too many changes all at once, which he could have found overwhelming.

Then in January, he began going to a local day centre called Helping Hands, which is focussed on supporting individuals aged 16 and over with a learning or physical disability, to progress within important areas of life by providing training in independence skills and a range of activities, including arts and crafts, horticulture, IT and cooking.

Samsoor began attending the centre three times a week on a Tuesday, Wednesday and Friday from 9.30-4.30pm. At the day centre, they found that there were no issues with Samsoor’s behaviour because he was very engaged with all the activities. However, on Monday’s and Thursday’s when he was at the service, the team found his behavioural issues continued, which was due to boredom.

Service Manager, Sam Nzanga introduced an Adult Development Programme to support Samsoor to learn life skills and to develop areas where he was experiencing struggle by taking part in meaningful activities on the days that he was at the service.

On a Monday, Samsoor is now tasked with making individual smoothies for each of his peers. By breaking the task down into smaller activities, the process can keep Samsoor engaged for the whole day.

While people with PWS can display a tendency to seek out food and to overeat, there has been no issues with Samsoor being around food or being tempted to eat the food while preparing the smoothies as he is so focussed on the task at hand.

The team supported Samsoor to establish a routine around making the smoothies, which begins in the morning with performing hygiene tasks. He then goes over to each of his peers and asks them what fruit they would like in their smoothie for that day. With the support of his support worker, Samsoor makes a list of the different fruit needed to make each person’s smoothie.

The next stage, he sits down with his support worker and they discuss what they can mix together with the fruit to make each of the smoothies. Once Samsoor is happy with what items he needs, his support worker then supports him to go to the local food and veg shop to purchase all the items.

After taking a break, Samsoor will then start preparing, chopping and blending the fruit and other ingredients; he then makes each of the different smoothies and puts them back in the fridge ready to serve at 4pm.

The team have also given Samsoor other responsibilities around the home, including on a Wednesday, supporting colleagues to test the fire alarms, which he really enjoys doing.

To help the team with supporting Samsoor, Helen also introduced several social stories, which are a social learning tool that uses short descriptions and pictures of particular situations, events or activities, that the team could use to support Samsoor with his understanding about what to expect in that social situation and why.

Helen also led a Positive Behaviour Support workshop for the team to build their confidence in using strategies and approaches that support Samsoor to de-escalate his behaviour and communicate his needs.

An example of one of the social stories, the team are working on with Samsoor is going to the doctor’s surgery as this had been a big difficulty for him, particularly when the doctor needs to take his blood work.

The approach the team take is from the moment that Samsoor wakes up on the morning of a doctor’s appointment they let him know, “we are seeing the doctors today.” They then let him know that he has a choice about having his bloods taken and that he can say no, while also explaining that even if he decides to refuse, the doctor will still need to see him.

This approach has worked well, and Samsoor is now able to attend the doctor’s surgery without any issues. The team are still gradually supporting Samsoor to accept having bloods taken.

Sam explains, “It was about using the social story to give him the information he needed in a way that he could process while also helping him to prepare. Now he will go to the doctor and say, “It is my right to say no,” which makes the doctor smile”.

As a result of the team’s support, Samsoor’s behaviours are now less intense and less frequent. He has also developed healthier coping strategies when his emotions are heightened and is comfortable finding any one of the support team to confide in if he needs to talk through his feelings.

Sam says, “When Samsoor is very emotional, we know to give him space and to support him from a distance and to provide reassurance that we can resolve the issue together.”

“Sometimes when he is feeling overwhelmed he cannot find the words to say, so we have given him a notebook which enables him to write down what he is feeling and to communicate it to the team in this way instead, which works really well for him.”

In addition to reducing his behaviours, Samsoor has also achieved a number of positive outcomes, including a reduction in weight, an increase in physical activities, an improved social life and improved life skills and experience.

Sam explains, “Samsoor’s personality is really shining through, he is such a likeable character and all the support team enjoying working with him.”

“Samsoor and I have a really nice bond and we have a mutual respect between us. He often waits for me by the door to arrive in the mornings. He likes to take my bags and lead me into the office.”

“One day, when I arrived to the service later than expected, it was on a day that he was due to go to Helping Hands and he was trying to delay going; we found out that the reason he didn’t want to go was because I hadn’t arrived yet and he wanted to see me before he left, which was very touching.”

Samsoor’s mum and uncle now come and visit Samsoor every other weekend which he always looks forward to.

Sam says, “His mum is so happy with the difference that she has seen in him and has commented, “My son is back.””

“She says she has seen the huge progress that he has made at Fletton and says he is exactly the same when he visits the family home now; he is calm and friendly and he listens – she is no longer afraid of his behaviour like she was before,” adds Sam.

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