Treatment tribulations

Case study

The name of the service user has been changed.

Situation: Javed Akthar, 46, has over the past year become increasingly disabled, the causes of which are unclear. He has lost all mobility, is unable to speak and is incontinent. His wife, Anita, has been caring for him with help from district nurses, one of whom referred him to social services.

Problem: Having been admitted to hospital again, Anita discharged Javed against the advice of the nursing staff. She insisted that he be cared for at home. An intensive care package was put together, including home care services, with four daily visits by two workers, although there were concerns about resourcing this package. The carers were having trouble with Javed as he was physically resisting their assistance – often flailing his arms about violently. In addition, he was 18 stone and difficult to move – even without resistance. Javed had been moved into a crowded small box-room which makes manoeuvring around awkward. He has a mattress on the floor, which again has increased the difficulty in lifting and handling him. His wife refuses to have him in their bedroom because of the incontinence – but equally refuses that he should be moved out of their home – even for respite. The other two bedrooms are taken up with their grown-up sons. When the care manager said it might be difficult to maintain this package, Anita shouted that this was only because she and her family were “Pakis”.

Practice panel Kingston-upon-Thames health and disability team panel responses

Val Reece
It is not clear from the scenario whether a network meeting took place before hospital discharge. Although Anita was insisting on discharge, there should have been an opportunity to call a multi-disciplinary meeting – which would have included Anita – to clarify her understanding of Javed’s medical condition, and perhaps gain some insight into her reasons for wanting to discharge Javed before the medical investigations had been completed.

Anita’s actions could be interpreted as potentially abusive. However, she could be acting out of fear of Javed’s illness and possible prognosis. Knowledge of the quality of Anita and Javed’s relationship before his illness might bring some understanding of Anita’s actions.

The district nurse does seem to have an established and working relationship with Anita and Javed and this could provide some helpful insight into the family life of the Akthars, including any role that the sons may have in the care of Javed.

If the district nurse had had previous concerns about Anita’s behaviour towards Javed it may be necessary to consider making use of the abuse of vulnerable adults procedure.

An occupational therapy assessment would have identified any equipment required or any necessary adaptations needed to the home. The provision of continence aids and appropriate help, support and advice to Anita may alleviate or resolve the situation in relation to her concerns about sharing a bedroom with Javed.

Javed’s understanding and ability to make decisions needs to be assessed. A referral to the speech and language therapist would assist with non-verbal communication. This would enable Javed to be provided with information regarding his situation and, if he were able, to make informed decisions on his future care and treatment.

There could also be language difficulties because English may not be his first tongue. An interpreter and an advocate could be offered to ensure Javed’s cultural needs are being met and may help to allay Anita’s fears that the services are discriminatory.

James Lampert
Anita is keen to enable her husband to live at home. Many of the problems that could result in the failure of a care package are environmental in nature and, with the co-operation of the family, could be changed to enable the care package to succeed and for Javed to stay at home.

There should be time allowed for a trusting relationship to be established if there is to be any significant progress in getting the family to change their lifestyle and their home.

Javed’s ability to communicate should be established at an early stage if he is to play an active role, express his thoughts and feelings and make choices about his care.

Javed appears to have some kind of degenerative neurological condition, which ought to be considered when helping the family to plan ahead. One approach could be to help Anita and Javed identify short-term and long- term goals.

In the short term, to enable the package to continue, the moving and handling problems will need to be resolved. The bed should be accessible to the carers. Adequate space should be cleared around it for the carers to work safely, or Javed could sleep in a larger room. Rather than using a mattress on the floor, a bed should be available which would enable a mobile hoist to go under it (assuming that there is space in the box-room to manoeuvre it).

In the longer term, the family may wish to consider how access to all the rooms in the house that Javed uses will be maintained – it is not clear whether they live in single-level accommodation, or whether there are stairs. Does Javed need a ramp to get in and out of the house?

If Javed has severe mobility problems, the family may like to consider whether their bathroom needs to be adapted for level-access showering facilities.

An overhead hoist may be considered as an alternative to a mobile hoist if space in the bedroom is limited. A powered wheelchair and an environmental control system might be appropriate choices to enable Javed to interact with and have some control over the environment in which he lives.

User view

Everything about this situation concerns me, writes Simon Heng. The most urgent issue is Javed’s medical and physical condition. Why hasn’t the underlying medical problem been diagnosed? Have the medical staff involved discussed his condition, their diagnosis and prognosis with the family, and talked with the family and the care team about his present and likely future needs? Has anyone pointed out to Anita and their sons that Javed’s health will only worsen if the present situation is allowed to continue?  

The health and safety guidelines of moving and handling people are becoming ever stricter, and, in my opinion, rightly so in most cases; care workers cannot be expected to jeopardise their health in the course of their work. My carers are too valuable to me for me to risk breaking them! Trying to care for someone who is lying on a mattress on the floor seems both difficult and possibly dangerous to their health.  

For whatever reason, it seems to me that Anita is not acting in the best interests of her husband. Her insistence on keeping Javed in clearly unsuitable conditions, where he cannot be cared for adequately against all advice, could be due to a refusal to accept how bad things have become. The accusation that their treatment is due to their ethnicity can be seen as a desperate defence in an untenable situation, an attempt to retain control over circumstances that she really feels she cannot cope with. From the description there seems to be no obvious racism in the way the family are being treated.  

I think this reaction is more common than is imagined, both for those people who are ill and for their relations. For myself, there have been times when I have wanted to ignore diagnoses and sound advice from experienced professionals, because by accepting them I would have to accept the seriousness of my declining condition. It is not logical, but it is human.  

If this is true, Anita cannot make judgements in her husband’s best interests. It would be helpful to involve the adult children in the decision-making process, and if this doesn’t lead to a clearer understanding and acceptance of appropriate help, there may be an urgent need to take legal advice on making someone else responsible for Javed’s welfare. 

Simon Heng is a disabled service user.