Paul Murray is 63 and had worked in the pesticides industry for most of his life. Up until about 15 months ago he had led a relatively healthy and active life.
He then began to suffer from tiredness, had some difficulty walking and struggled to pick up and hold onto things – particularly his cup of tea in the morning.
He was soon diagnosed with motor neurone disease – which causes the nerve cells that send instructions to your brain to degenerate causing weakness and wasting of muscles. Every year, about one person in 50,000 will develop motor neurone disease.
Since he retired on ill health grounds Paul has been dependent on support from his wife, Brigid.
They have no children and they have fallen out with their respective siblings and their families. For 10 years they have been insular and reliant on each other.
However, as Paul’s health is deteriorating, Brigid is struggling to cope. Social services have been providing some home care. What has got to the Murrays is the fact they felt Paul’s assessments took very little account of other important features such as panic attacks, hallucinations, inability to communicate or understand, and the psychological effects of the illness.
There are no local specialist or support services available for people with MND. One care manager mentioned the idea of direct payments but admitted that the council has been slow to set up a scheme.
Paul and Brigid have received a poor service so far. I would explain their right to complain.
Paul should be at the heart of a fresh, holistic, multi-disciplinary assessment. In Derbyshire, this would be an outcome-focused assessment. This is a care management process founded upon the social model of disability, whereby Paul, not his social worker, defines his goals and needs. I would also offer Brigid a carer’s assessment to focus on her needs, rights and wishes.
Given Paul’s terminal condition, his outcomes may include wanting to say goodbye to estranged siblings, and deciding how and where he wants to die.
From October, the Mental Capacity Act 2005 will give people new rights to plan future care and treatment, in case they lose the capacity to make decisions. I would explain to Paul his legal rights to do this by making an advanced directive and lasting powers of attorney.
I would be exceedingly distrustful of Paul’s alleged “inability to communicate or understand”. Motor neurone disease can cause a degree of locked-in syndrome, but rarely results in cognitive impairment. Principles of good practice, and new duties under the Mental Capacity Act, would compel me to take all practicable steps to enable Paul to communicate his wishes. I may need a speech and language therapist to find a way for Paul to express himself by using a device such as a lightwriter, or if he is severely incapacitated, a muscle he can flex in response to closed questions.
I would encourage Paul’s GP and consultant to address his hallucinations and panic attacks. As Paul has MND, these are probably caused by a lack of oxygen, due to progressive respiratory failure. Paul may benefit from a non-invasive breathing machine and a breathing space kit – a prescribed medication and information box, provided free by the MND Association.
Finally, direct payments could well suit Paul, as he will need responsive services as his condition progresses.
Derbyshire adult social services recognises the specialist nature of the support required to undertake a truly holistic and person-centred approach with people with life-limiting illnesses.
We are one of only a few local authorities in the country with specialist care management support for people with MND. Dying with dignity and respect is paramount. A care manager with specific skills and experience should give Paul and Brigid the opportunity to safely explore their painful emotions.
This role has created good working relationships with acute hospitals which mean referral to social services is timely following diagnosis. Rapid deterioration necessitates speedy referral to other disciplines. I would have expected an occupational therapist to explore housing adaptations with Paul soon after diagnosis. Early involvement means work can be well under way by the time it’s needed, using fast-track procedures giving priority over routine cases. Liaison with primary care trusts should start early on with regard to care and equipment.
Brigid would be eligible for a carer’s assessment. Local hospices could offer Paul day care or short breaks which would in turn allow Brigid a rest from her new caring role. Complementary therapies, art therapy and carer group support are some of the opportunities offered locally in Derbyshire. Bereavement counselling and preparation for death can be provided through the Hospice at Home service.
Direct payments should give Paul freedom to directly employ whoever he chooses to meet his changing needs. In my experience, close family often want to care for their loved ones before they die. Financial hardship often prevents this, and a family member can only be employed as a personal assistant through direct payments if they do not live with the person they wish to look after.
This, sadly, often results in missed opportunities for people to have someone close to provide care with personal needs, and share the time that they have left together.
THE USER VIEW
Unfortunately, Paul’s and Brigid’s experiences are not unique. Much of today’s adult social care provision focuses almost entirely on meeting people’s physical needs, neglecting – or ignoring – the mental or psychological aspects of illnesses like motor neurone disease, or progressive multiple sclerosis. Providers of social care only seem to be concerned with non-physical symptoms of someone’s condition if these impact on the service user’s physical care: for example, if Paul was displaying “challenging behaviour”, potentially making care provision difficult for paid carers.
Added to this, the emotional impact of devastating, progressive illnesses like MND goes virtually ignored, beyond expressions of sympathy.
To begin with, the Murray’s social work team – as well as the consultant who made the diagnosis, their GP and the district nursing team, who should all be involved in Paul’s care – should take responsibility for using their professional skills to discover other sources of support, help and information. The local clinical psychology department could be a useful source of expertise as a first step.
Support for carers has been developing all over the country in the last few years it would be surprising if there wasn’t a carers’ network, or at least a carers’ group, in the area, from which Brigid could gain some peer support, and respite from the situation at home.
The Motor Neurone Disease Association supplies basic information about the disease and its various forms. There are contact names and addresses for local support groups (which have their own websites) which now cover the whole country.
The website also provides a telephone number for their professional advisers, MND Connect (08457 626262) which offers “a quick route to get advice, practical and emotional support and directing to other services and agencies”.
In these days of financial restrictions in adult social care, it’s hardly surprising that the help on offer for the Murrays seems one-dimensional. On the whole, there is neither the expertise, resources or motivation to develop psychological help within the statutory services for any aspect of chronic diseases or disability.
Perhaps this is where voluntary organisations come into their own, with their greater flexibility, peopled by individuals who have a commitment to a particular condition.
Simon Heng is chair of the Worcestershire Association of Service Users and writes a regular column for Community Care
● The name of the service user has been changed
This article appeared in the 4 October issue under the headline “What to do when time is running out”