Battling the resistance

A man with severe learning difficulties is cared for by his family which is in crisis and refuses external help. Our panel advises

Case study

The names of the family mentioned in this article have been changed
SITUATION: Scott Freeman, 20, is the oldest of three brothers and lives at home with his mother, Gwen, her partner, Steve Allsop, and Scott’s uncle, Danny Evans (Gwen’s younger brother). Scott’s father died last year. Scott has profound learning difficulties, cerebral palsy and epilepsy. He is a wheelchair user and has no verbal language but does make sounds that the family understand.

Problem: Gwen has a history of drug use, which has accelerated since the death of her husband, Scott’s father. She is also in poor health with chronic bronchitis. Steve has a cocaine habit for which he is seeking treatment. Because of the drugs issues, Scott’s uncle moved in to help with caring for his nephew – but he has drink-related problems and was recently admitted to hospital after collapsing. This has meant that Scott’s two brothers, aged 18 and 19, have also been helping out, and neighbours take Scott out for walks and trips to the pub. The family has resisted social services support because they removed Scott when he was born: Gwen was a known drug user and Scott’s father assaulted a social worker and police officer who were investigating their competence as parents. It was decided that they couldn’t cope with Scott “not being normal”. But Scott was returned to the family after the birth of his brothers. And the family has coped somehow. But, although clearly struggling, the family still rejects all external support.

Practice panel – Learning difficulties team, Bath and North East Somerset

Panel responses
Helen Thompson
This appears to be a family in crisis. However there is no evidence of abuse or failure to meet Scott’s needs. What is clear is that Scott could be vulnerable in this situation and support should be available.

As Scott is 20 this could be the first time that he has had involvement from adult care services. Scott’s school and disabled children’s team could provide information about his history. The family may not have received input since Scott was a baby and this might demonstrate that this family has coped over the years. Scott clearly has an established circle of support including family, neighbours and his local community.

We do not know where this referral has come from and whether Scott and his family are aware of it. It would be essential to know this before proceeding with any work. The social worker needs to acknowledge this family’s anxieties about social services and consider how to re-engage sensitively.

As well as offering Scott an outcomes-focused community care assessment his family should be offered carer’s assessments. These would provide an insight into his family’s long-term commitment to his care. Perhaps carer’s services might help sustain the family unit? Also a benefits check could lead to a carer’s allowance being awarded and other benefit increases.
Scott’s goals and ambitions need to be clarified. Perhaps he would like to attend college or consider independent living? In addition, Scott may benefit from an individualised budget as a means of providing him with increased support without intense input from social services. If Scott is unable to manage a direct payment of the social care money awarded, another way to administer the individualised budget could be considered such as indirect payments (money paid to someone else on the Scott’s behalf); money paid to a broker; or directly to a provider of services.

The case study does not refer to Scott’s feelings or presentation. If further investigation revealed abuse or neglect the vulnerable adults procedure should be invoked. But if Scott and his family choose not to accept social services involvement that would have to be respected as there is no indication that his needs are not being met.

Sharon Day
It is unclear whether a referral has been made to Scott’s community learning difficulties team. If not, social services or Scott’s GP may refer to health professionals to re-engage with this family. Perhaps the family would be more accepting of this involvement than social services.

The police escort suggests concerns over the safety of a visiting social worker. Well thought-out risk assessments should be in place. It may be best to co-ordinate meetings within the GP surgery as this might be a place where the family feels comfortable especially as Gwen is likely to visit regularly in relation to her chronic bronchitis and other health needs. Scott also is likely to be a frequent visitor to the GP for monitoring of his epilepsy medication.

Community nursing and psychiatry could monitor Scott’s epilepsy and provide an insight into his other health concerns. This may be a good chance for workers to engage with the family and build a good rapport. The community nurse would carry out an assessment to identify his needs, strengths and what support could be offered. This might include a health action plan or a person-centred plan or both.

The assessment may highlight the need for a speech and language therapy assessment to establish Scott’s communication and support needs. Effective communication is vital for Scott to express himself. Perhaps he would like to be referred to an independent advocacy service.

Psychology may be useful should Scott wish to work on his feelings about his father’s death, the substance use issues within the family and his mother’s new partner.

As Scott uses a wheelchair an occupational therapy and physiotherapy visit might be an avenue on which to engage the family as his equipment needs should be reviewed.

Overall, health and social services working as an integrated team offering knowledge, skills and support should help to provide a stable, fulfilled environment for Scott. Whoever was the most suitable team member to engage would need to rebuild the lost trust before involving more professionals. Clear communication of what is intended needs to be kept throughout.

User view
Although this family has different drug-related problems, there is no evidence of any type of abuse towards Scott, write Daniel Hardy and Zara Bailey.

It seems that Scott is loved and the family try as hard as they can to support him. He also has support and is cared for by other members of his wider family. Even though he has been in hospital due to drink-related problems, Scott’s uncle Danny has also made an effort to take care of him. Even Scott’s younger brothers are now helping out with his care. This willingness of the family as a whole to care for him is probably the reason that the family has coped without any external help.

It seems that the family does not want anybody else to interfere with the caring, as there may be a fear that he will be taken away from them again. However, everybody in the house should be receiving support: Steve is trying to overcome his cocaine habit, which shows a willingness to have a better life; Gwen is seriously ill and needs help from outside sources as her drug-taking has become worse since Scott’s father died, so she might have depression.

It is important that the family knows that Scott will not be taken away from them again. The social worker who dealt with the family before said the family could not cope with Scott “not being normal”. He was wrong. It would be good to see everyone in the family receive help for their problems and for them to allow outside support for Scott. Then they might have more time to help themselves.

The family may also be worried about who would care for Scott as they may be protective of him because of his complex disabilities. But there are many carers and supporters who are qualified and trained to work with Scott’s specific disabilities.

Another supporter could help Scott’s ability to express himself with a communication board. Scott may also need support to understand what his father’s death means, such as why he is no longer around. As his mother has so far coped poorly with the death, it is possible that she has been unable to explain his father’s death in a way that Steve understands. So sometimes it is better for somebody outside the family to explain.

One of the books in the illustrated series, Books Beyond Words, clearly explains what death means, which might be good for Steve to look at with a supporter.

Daniel Hardy is equal access to justice project worker with Voice UK, a national learning difficulties charity. Zara Bailey is his supporter