On the Receiving End

(Version published in Therapy Weekly, 1994, Nov 17)

She was stooped over and shuffling towards the ward. Could this pain-wracked person really be our two and a half year old daughter? Since she had become ill, I had always been in the same room as her and now it was a shock to see from a distance what she had become. I had not been inside a hospital since going on maternity leave from my job as a senior Occupational Therapist in rheumatology some months before, but it seemed a lifetime ago.

Becoming a recipient of hospital care

Now we faced a changed life because Bethany had severe systemic onset Juvenile Idiopathic Arthritis (JIA). Added to this, our six-month-old baby daughter was home and my tears were for my separation from her too. The irony of the situation was that my former post was a project leader piloting a new district-wide Occupational Therapy service. However, no training in the world could prepare me for my own small daughter's arthritis and admission to hospital.

Seeking a diagnosis

Since then, my husband and I have been on the receiving end of many professionals' care. This has been a mixed experienced and I have learnt a great deal about the difference between professional treatment delivery and extending care. We had battled for four months at home nursing Bethany during night-time fevers and her daytime tears, listlessness and disinterest in playing. When at last she received effective medical attention, it was in the shape of this emergency admission to hospital. Apparently, the fact that I had managed to avoid the development of contractures and to keep Bethany walking meant that she did not give the typical picture of a child with sudden severe arthritis. It may have been easier for non-specialists clinicians to recognise her illness if she had become immobile, and chair-shaped.

Children get arthritis too

We were very fatigued, anxious and grieving to see her rapid decline and were shocked by the routine firmness of the nurses arm lock when they took a blood sample. We flinched again at the X-ray technicians manhandling of her hands. We knew this was not a specialist rheumatology unit, but surely professionals in childrens hospitals knew that children got arthritis too, and that any movement, especially of the hands could be excruciatingly painful?

On our second day in hospital, the Physiotherapist introduced herself and took us down to the department. Our friendly chat came to a sudden end when she and another therapist held Bethany down in order to make two leg splints. To us it seemed that they showed no regard for Bethany's pain but instead needed to complete the splints by lunchtime (when one of the therapists left the hospital premises to work in her private practice.) The therapist's pressure of time clearly took precedence over our daughter's need for a kinder but slower introduction to splint making.

Advice from another parent

By chance there was another child with arthritis in the physiotherapy department. Her family waited outside the physiotherapy room to speak to me. The father said the therapists had been the same with his daughter, and advised us to get referred to the specialist unit as soon as possible where Bethany would get more appropriate and informed care. It has taken great care and effort by the specialist orthotist (splint specialist) to desensitise Bethany from her anxiety over having any more splints made. This approach has been crucial because Bethany would need to use splints for many years to come.

Professional confidence before competence

At the time the first physiotherapist explained that she had 'just picked up her technique' and then showed that she did not understand the term 'orthotics' (the proper term for this clinical process.) At the time, I did not intervene because I was too shocked, and upset and focussed on calming my daughter to intervene. I felt guilty that even though I had been trained in splint making, I did not stop the therapist.

Being honest about what practitioners do

However assertive you are in other situations, it is very difficult for any parent to raise any objection or comment to a professional at the time. Parents and patients have a reflex to trust healthcare professionals, and when mistakes or unacceptable things happen, most parents do not tell the professionals involved. The result is that professionals may think there practice is acceptable, and are unaware that service-users are dissatisfied, angry or distressed. Parents would help this process by being more honest with practitioners, and practitioners could be more approachable and reflexive about their service and personal contact with service-users.

Some months later I spoke calmly to the therapist to express my rejection of her approach and recommended that she sought proper training, or ceased to use amateur splint making skills because of the long term significance to children who had ongoing conditions. I felt so much better for having rationally explained the affect of her approach and think that she changed her practice. Over the years, there were many other examples of tunnel-vision by well intentioned but overworked health practitioners who seemed to attend to the treatment session rather than the whole child. As a former health professional, I probably did the same in the past.

Being honest about what families do

We regularly met up with other parents of chronically sick children and this has been illuminating. In a local group of parents of children with arthritis, we found that less that a quarter of parents actually used the arm or leg splints made for their child although they tell the doctors and therapists that they did use them. One parent agreed to return the splints for the therapist to assess but moaned to us "Ill have to scuff them up a bit because we've never used them". When asked, the parents said that they lied to health professionals because that looking after their children was difficult enough and they did not want to be told off by people who failed to recognise the pressure parents were under. I am sure experienced practitioners can judge whether the splints had been worn or other prescribed treatment complied with. The high proportion of families who felt unable to discuss openly what happens at home surprised us. The apparent lack of honesty and understanding between the parties is important because it could make the treatment of individual children less effective.

Shared care- what does it mean?

As a family, we supported shared care with healthcare professionals but we have come across a wide range of professionals' interpretation of this. For example, I agreed to be responsible for Bethany's medication while she stayed in a different hospital. I was astonished when a nurse later gave me a sterile stick and asked me to take a nose and throat swab from Beth. I declined her request and suggested that that was a nursing task and not that of a mother.

Conclusion

As a society, and certainly as parents of chronically sick children, we need a system of professional health education that bridges the separate worlds of clinical expertise and family life. CHOICES is our effort to achieve this so that the care of individual children can be as effective as possible, that teamwork between professionals and service users becomes more meaningful, and that that the needs of family members are recognised and supportively addressed.

by Carrie Britton

Information provided by:
CHOICES, P.O.Box 58, Hove BN3 5WN.