We revisit a case originally seen from an older people’s perspective. This time we look at it from the perspective of people with learning difficulties. Service users’ names have been changed.
Situation: Theresa Kennedy is 76 years old and lives with her son, Martin, 50, who has learning difficulties. Her husband died last year after a long illness through which Theresa nursed him. Her daughter, Alice, lives nearby with her husband and five children. Theresa has always been Martin’s carer, and has always resisted outside help because Martin is her son and it is her motherly duty to stick by him.
Problem: Theresa has become more prone to forgetfulness. She seriously scalded her hand when she put it into a deep pan of hot fat she was cooking for Martin’s chips, forgetting that it was on. It was during her visit to the accident and emergency department after this incident that she was referred to social services. She brushed off their offers to help and discharged herself home. Alice has been visiting but has her hands full with her own young family and should things deteriorate would not be in a position to accommodate Theresa or Martin. Theresa has some awareness that she is not coping as well as before, but sees it as a minor irritant rather than a potential long-term problem. Martin also disclosed to the hospital social worker that his mum hits him with a riding crop when he, as he says, “Doesn’t pull his weight around the house” and says that while it hurts and makes him cry, it’s OK because he “deserves it”.
The hospital social worker is the first point of contact for Theresa and Martin and plays a crucial role. While Theresa has declined the support offered and discharged herself, the social worker has a duty to report the allegation by Martin. This disclosure could form the basis of an investigation under the vulnerable adults policy to determine whether Martin’s home environment is safe. Information needs to be gathered as neither the extent of the alleged abuse nor how long it has been happening are clear. Does the sister Alice know? The fact that Martin feels that he deserves to be hit with a riding crop is also a concern.
The hospital social worker needs to refer Martin to the local community learning difficulties team (CLDT). Martin would therefore have his own social worker who could discuss various options to ease relations between his mother and himself, for example: respite, Family Link, daytime activities, employment opportunities, supported living options and so on.
Martin may also agree to be referred to a psychologist attached to the CLDT. During these sessions Martin could explore his feelings regarding being physically assaulted by his mother, or his father’s death. As Theresa is an elderly carer, the social worker could begin to discuss Martin’s long-term future including his accommodation options and care provision. Martin would probably benefit from support to increase his everyday living skills and opportunities to socialise. Martin may be interested in working with an advocate to enhance his quality of life.
By initially focusing support on Martin and building positive relationships between the social worker and the family, Theresa may accept assistance for herself. The CLDT social worker, recognising Theresa’s reluctance to admit she is not coping, could introduce the idea of support from the adult care team and make a referral. This would allow Theresa access to bereavement counselling, support as a carer, the opportunity to receive help regarding the attacks on her son and an assessment of her own needs.
Theresa may benefit from visiting a memory clinic concerning her forgetfulness. If Theresa and Martin would like to be responsible for their own support packages direct payments might be discussed.
This situation is a clear example of the need for joint working between different agencies; in this case hospital, older adults and learning difficulties services. People with learning difficulties are living longer, as they are receiving better medical care. Consequently, support at home is being provided by an increasingly ageing population of carers. Commissioners need to take this into account when planning services.
Both Martin and his mother have needs which are not being addressed by services because of Theresa’s reluctance to accept help. She would benefit from an assessment by the older adults service, as her increased forgetfulness could be an indication of the onset of dementia, or could be linked to a depressive reaction to the death of her husband. The appropriate support could then be provided to her through the older adults team. This should happen in parallel with a carer’s assessment, that is her needs in relation to being a single elderly carer of a son with learning difficulties.
A comprehensive assessment of Martin’s daily living and social skills by an occupational therapist is essential to clarify how much support Theresa is providing to Martin, or whether he, perhaps, is caring for her, particularly as she becomes more forgetful. Does he have the necessary skills to keep himself and his mother safe from her forgetfulness? Would he be able to live in the house without his mother?
I am very concerned about Martin’s vulnerability if his mother is indeed hitting him, as he disclosed. Information needs to be gathered to clarify what is going on at home, perhaps involving Alice, to decide whether a vulnerable adults procedures needs to be put in place. Martin should be given the opportunity to discuss his feelings about his home situation with, perhaps, a psychologist. There may be issues around bereavement to explore regarding the illness and subsequent death of his father, and it is worrying that he considers that he “deserves” to be hit.
Martin should be offered respite or day services or both to provide a “safe” environment to think about his situation and to help prepare him for a future without his mother. Theresa should contact her local carers network for support and appreciate that it is OK to accept help from services, and to “let go”.
You can’t assess anything unless you know the whole story and it feels as though there are lots of things we don’t know here, write Karen Flood and Julia Erskine. We wouldn’t want to make any decisions about what needs to happen without spending time with Theresa and Martin, hearing their story and learning about their shared history.
It feels as though there need to be three levels of support offered to Theresa and Martin. First, there needs to be someone to listen to the family’s story and understand the whole picture.
Second, an independent advocate could help Martin speak up about what he wants and needs. They could put him in touch with local services geared to people with learning difficulties, such as his local speaking-up group where he could build up his confidence and gain help and support from other people.
This would also give him the chance to think about his own life and what he wants to do.
Thirdly, Theresa needs the support of another set of parents who can spend time with her and help her to look at the reality of the situation and the alternatives she has.
This needs to be people that Theresa can relate to, people she can trust and whom she recognises has shared her experience. Theresa needs to hear that it doesn’t have to be this way. She needs to understand there is a system that can support them and it can be on their terms.
Any support that is offered needs to work with and not against the family. They have managed for all these years with absolutely no help from social services and both of them must be terrified that their family is going to be broken up if they ask for anything.
One really practical way forward would be to offer Martin and Theresa the chance to develop a person-centred plan together.
The benefits of this approach are that it would provide an opportunity to help to celebrate the strengths they have as a family while giving them the chance to look at some of the difficulties they may be experiencing and look for solutions that feel right for the whole family.
Karen Flood is chairperson of the National Forum of People with Learning Difficulties; Julia Erskine is a mother of a young disabled woman, and a graduate of Partners in Policymaking – a leadership course for parents of disabled children.