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Resources > Chronic Disability
Working with people with long term disability
In this country it is estimated that there are 85,000 people living with Multiple Sclerosis, over 300,000 with disability post-stroke and 135,000 requiring round the clock care due to severe head-injury
According to the 2001 census nearly 2 million people between 16-74 are permanently sick or disabled.
Care for those with long term disability is one of the more hidden areas of healthcare provision. Out of the limelight of intensive care units, cancer care and paediatrics a significant number of health care professionals are working with people who are not facing imminent death or complete cure, instead are coming to terms with a changed perspective on life due to a sudden accident or progressively developing disease.
This care may take place in rehabilitation units, day centres, out-patient clinics or within the clients own home. Some of the issues faced are very similar to those faced by people working in the acute setting of large hospitals, others are more unique to this particular area of work.
This paper outlines a few of these pertinent issues in work with people with long term disability.
Demand for services
“In my community team we have a 5 month waiting list. We regularly have to talk to people who ring up and explain that we are unable to visit them for several months. We have the ability to see some urgently but nearly everyone is on the list due to a problem that is severely affecting their lives. In a way we have to depersonalise the referrals to make it easier.” Ruth, Physiotherapist.
With the high numbers of people with a disability in this country it is not possible to provide everyone with continuous input. Ways to deal with this are being trialled throughout the country by use of relatives, trained and untrained carers, regular review systems etc.… Healthcare workers are often involved with clients over several months and clients can become reliant on the regular input for social as well as health reasons. It can be hard to know when it is the right time to discharge the client.
Prayer
- Pray for workers who are daily faced with long waiting lists and phone calls from needy clients; for strength and energy and that they will not become disillusioned.
- Pray for the wisdom for those who make decisions about a clients discharge and for those who are trialling the best ways to provide follow-up care.
Emotional involvement“Having worked so closely with Julie for several hours a week over so many months I feel I know her better than some of my friends. I also know that she sees me as a friend, especially as sometimes I am the only one who understands what she is trying to say.” Kirsty, Speech and Language Therapist.
Working with people with long term disability often means long-term involvement. This is often a great privilege as friendships are developed with people who are in very different situations and stages of life. It can also give a greater opportunity to share a personal Christian faith by both example and through discussions born through friendship.
However, there is also the danger of becoming too involved and taking on so much of the emotional needs of the clients that it can become a burden for the healthcare worker. Wisdom is needed to build appropriate relationships that maintain the professional boundaries.
Prayer
- Pray for the relationships that Christian have with their clients. That by the attitude of the healthcare worker it will lead people to want to know more about the Christian faith.
- Pray for wisdom for healthcare workers to know how to respond to clients emotional needs without becoming weighed down by them.
Caring for carers
“I think often what I feel is obligation or guilt over wanting to leave, rage against John, against God… but then I look at him and I force myself to see the man that I married and he becomes that man, he’s transformed into someone that I love and I’m transformed into someone that loves him. It’s not all the time but it’s enough.” Alicia Nash talking about her husband with Schizophrenia in the film “Beautiful Mind” by Dreamworks.
This is a quote from someone who is learning to cope with a husband with Schizophrenia. It is a common sentiment felt by many wives, husbands, parents and children faced with the task of caring for someone who has changed significantly due to long term disability.
Those working with people with long term disability often have the privilege of not just working with the client themselves but also being involved in the lives of those around them.
Prayer
- Pray for healthcare workers to have the ability to maintain professional boundaries and yet be able to share Christ by building appropriate supportive relationships with clients’ families.
Teamwork
“In our rehabilitation unit we have only 3 Doctors, 3 Physios, 2 OTs, 1 Speech and Language Therapist, 1 Dietitian and a relatively small number of Nurses and Healthcare Assistants. Everybody knows everybody.”
Many areas of work with people with long term disability are carried out in small multi-disciplinary teams. This is often very positive as it promotes different healthcare professions working together and providing a united front for the client. On the other side due to the diversity of the professions within the team it can sometimes lead to miscommunication and division.
Prayer
- Pray for good communication within the multi-disciplinary teams and understanding between the different professions.
Provision of resources
Emily is 36 and was diagnosed with Multiple Sclerosis ten years ago. She is no longer able to get up the stairs. She is presently sleeping in the only communal room in the house. She is embarrassed by this especially when having visitors around. Her Occupational Therapist has placed her on the list for a stair lift but the present waiting time is 9 months.
Due to funding limitations there are often finite numbers of resources available. Therefore healthcare workers and people at higher management level often have to decide on resource provision not only by need but also by prioritisation and availability. This can lead to difficult decisions when deciding whose need is greater.
Prayer
- Pray for wisdom of those at decision making levels in resource allocation.
- Pray for those workers at ground level for the ability to demonstrate concern for client even when it is not possible to provide the needed resources.
National Service Framework
Part of the government’s plan to improve healthcare services in the UK is to produce National Service Frameworks (NSF). These frameworks are intended to promote quality care and ensure national equity of service.
Since 2001 a NSF for Long Term Conditions has been developed and is due to be completed next year. This NSF will have a particular focus on the needs of people with neurological disease and brain and spinal injury. It will also consider some of the generic issues of relevance to a wide range of people with long-term conditions and disability.
Prayer
- Pray for wisdom for the people involved in the development of the NSF. This includes service users, carers, health and social care professionals, managers and voluntary organisations.
- Pray that the publishing of the document next year will lead to improved equality of services for clients.
Senior Physiotherapist in Neuro-rehab, Southampton City PCT.
