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(The names of the service users have been changed)

CASE NOTES
Practitioner:   Karen Taylor, care manager,  and Brian Marshall, practice  team leader.
Field: Learning difficulties.
Location: Glasgow.
Client: Rory McFadden is a 25-year-old man with Down's syndrome and  very limited verbal communication.  He lives with his mother, Fiona.  His siblings have all moved out and  his father died three years ago. 
Case History:  Rory requires assistance in all  aspects of daily living and receives  36 hours a week day support from a  care provider, and attends a day service twice a week. His mother has mild learning difficulties and problems with anxiety and panic attacks. There is no doubt that she loves Rory but her own difficulties (not least a lack of positive parenting in her own childhood) have a large impact on her ability to care  for him. Previous care managers have consistently grappled with these concerns. Not long after Karen Taylor  took over the case Fiona's ability  to cope deteriorated. 

Dilemma: Although aware that she  was unable to cope, Fiona would not  ask for help for fear of having Rory  taken away from her.
Risk factor: By allowing a vulnerable Rory to stay at home with his mum,  with all her difficulties, there was a risk that he may suffer from neglect.
Outcome: Fiona is now able to ask for and accept help with caring for Rory -  and he continues to live at home with  his mum just as he always wanted.

British parents who are struggling are less likely to ask for help for fear of being labelled failures than parents in some European nations, such as in Scandinavia.

For Fiona McFadden, a mother of five, such a fear had been rooted in her past experiences. A woman with mild learning difficulties who drank heavily and was vulnerable to bouts of depression, she had frequently been unable to cope with her children, at times resulting in their removal by child protection social workers.

However, now all her children have grown up and, all bar Rory, have moved out. Rory, 29, has Down's syndrome. Last summer, despite an extensive support package in place, Fiona was finding it increasingly difficult to cope with Rory.

"When I first got involved I was aware of the issues and my priority was to get in and establish a good relationship with Fiona," says care manager, Karen Taylor.

"The family had been known over the years to the department because of concerns over their parenting, and I think it's fair to say the way the department had reacted had broken some of the trust with mum," adds practice team leader, Brian Marshall. "That's why we chose to work on that with Fiona - and in a way more in tune with an adult with learning difficulties because she had been used to us being a child protection agency."

At first, unsurprisingly, things were tough for Taylor. "Fiona was very difficult to get hold of - she wouldn't answer the phone, and if she was in she might not answer the door," she says.

There were also concerns that Fiona was drinking at that time and associating with other people who were using her home as a party house. "She was lonely, depressed and letting inappropriate people into the house - and there was a major family dispute which involved Fiona being assaulted. Naturally we were concerned about Rory's well-being," says Marshall.

Fiona then began to stay at times with a new partner, who lived outside Glasgow. She would take Rory with her thus depriving him of services. "She had no understanding of the need to pick up the phone and tell us. We all go away for a few days - that's fine. The care provider even said if they had known they could have made attempts to visit so that Rory could get some support," says Taylor.

Marshall adds: "We had to tell her that going away like that wasn't acceptable because she was putting Rory at risk. We wanted her to come home and work alongside us. We had no option but to call a vulnerable adults case conference."

The conference pulled together all those involved. "We focused on building relationships and supporting Fiona to cope with Rory's care. In fairness, she was a caring parent but didn't have the skills to cope."

Workers helped Fiona focus on the positive side of things. "It wasn't just about what was she wasn't doing, but rather what she was doing well and what we could help her with. For example, when Rory challenged, she would challenge back: shout, bawl and threaten him - because that was the way they went at each other. It's easy to be judgemental about the physical stuff that's going on - but it was a cultural thing for them. Rory also interacted in that way with his siblings and so we had to work around that," says Marshall.

He continues: "We had to show mum ways to positively parent and convince her that it's acceptable to hold your hands up and say, 'I've got a son with a learning difficulty: it's hard and I'm not coping'. This was tough for her because in the past when she said that the department removed her children."

This is where the trust built up by Taylor became important. "When the case conference was set up she had already started to make significant changes to her lifestyle. Afterwards she said she was nervous but that it was really good to see all the people who cared for Rory, and recognised that it was for Rory's benefit," she says.


It was a big turning point for Fiona. "Now everything is great," smiles Taylor. "I still visit. She can't read and her phone is cut off at the moment, but she now answers the door to me or if she's upstairs she'll shout out the window to me - which is something she would never have done before."

Marshall adds: "We recognise there will be times when mum's health will impact on Rory - we know that. We're aware of the issues but what we have is a level of trust with Fiona, who can now say to us 'I'm not doing too well, I need help'. That's the difference."

Arguments for risk

• It is preferable to keep families together if possible. Rory and Fiona's relationship may have been volatile at times but there was a recognisable bond and love between them. That was something worth preserving and worth the risk. "He was where he wanted to be - at home with his mum," says Marshall.
• The workers recognised that trust was the key to keeping Rory safe at home. By winning Fiona's trust they knew that she would be able to get in touch if things were getting too much and accept the support needed. Home carers, day service staff and Taylor would between them still have daily contact with Rory - and would be able to monitor the situation; provided, of course, Fiona stayed at her home rather than visiting her partner.
• The vulnerable adults conference ensured a consistency of roles and responsibilities. For example, Rory's challenging behaviour is being managed consistently by home carers, day service staff and Fiona. 
  

 Arguments against risk

• Fiona simply struggles to cope. Her reaction, rather than to seek help, is to withdraw, become depressed and drink excessively which adds to her depression.  Given Rory's vulnerability, Fiona's physical and mental health and lifestyle cannot be considered safe.
• There appears to be a number of concerns raised that were not acted upon. As Taylor says: "Support staff would say that the house was not a hygienic, tidy or safe environment. But I had been in a lot worse. It did seem that the living area and kitchen were fine, other areas might not have been up to my standard but that wasn't a major concern for me." 
• There were also reports that Rory was, among other things, untidy, poorly dressed and wearing the wrong sized shoes. However, Fiona displayed an inability to confront the truth. "When I tried to address these with Fiona, she would make out that other people were lying," says Taylor.

Independent Comment
Taylor and Marshall have shown a real commitment to positive practice. They have shown that if you work with someone and relate to them as a person, you will establish trust, which enables things to improve, writes Kathryn Stone.

At Voice UK we hear the most awful stories of people with learning difficulties having their children removed, simply because the  authorities cannot consider the fact  that people with learning difficulties can be good parents, with skills, information and support.

What's really good about this case is that Taylor and Marshall didn't try to change Rory and Fiona; they changed everything around them to accommodate them as individuals. For example, by understanding that not everyone has a round-the-dinner-table chat to sort out their differences. It seems that they struck exactly the right tone here - protecting Rory as an individual and supporting Fiona.

Now they could consider taking this good relationship further. For example, what are the alternatives for Rory?  Does he have an advocate to support him to think about what he wants for himself for the future? Does Fiona want to carry on with her lifestyle - or -  might she want to live her life differently?

Social work can be about a very complex web of relationships and trust. This case has shown that if you truly believe that each person has a value then your trust will be repaid with benefits for potentially very vulnerable people.

Kathryn Stone is director of Voice UK - a national learning difficulties charity