A joint initiative supporting mothers with arthritis

A hospital in South West England has developed a remarkable V - inter-disciplinary initiative to provide better support for mothers with arthritic conditions. It provides an excellent model of good practice - demonstrating the advantages of improving communication and pooling expertise, both among different professionals and among mothers. In the following pages, the key professionals and a member of the mothers’ group describe their role in this joint initiative.

Sheila Pearson, Senior Physiotherapist, Rheumatology Unit

A group of five young mothers who have arthritis and receive intermittent treatment at the Princess Elizabeth Orthopaedic Hospital in Exeter were encouraged by Dr Jacoby (consultant rheumatologist) and rheumatology stall to attend a meeting to discuss the problems they were experiencing In relation to their arthritis. It was discovered that all five mums were having similar problems coping with the disease and bringing up a young child at the same time.

A meeting was arranged between the mothers, physiotherapist (rheumatology unit), physiotherapist (Maternity Unit), physiotherapist (community obstetrics), occupational therapist (rheumatology unit) and midwife (Maternity Unit).

This was very successful and has led to a number of important improvements in the care we provide, namely:

1) Awareness of the disease among staff at the Maternity Unit.

2) Establishing a communication line between patients, Maternity Unit and the rheumatology team at the Orthopaedic Hospital.

3) Suitable furniture and equipment for women attending the Maternity Unit.

4) A pamphlet for young mothers and mothers-to-be is currently being drafted. This includes information on joint protection antenatally and postnatally; drug effects on pregnancy; types of birth available for women with arthritis; tips from mothers. It is hoped that this pamphlet will improve the flow of information and provide a starting point to help them and give further contacts for advice.

5) A support group for mothers. A room was made available at the hospital for the mothers to meet and the self-help group is now underway. It is hoped that other arthritic mums will continue to join this group.

RK Jacoby MD FRCP, Consultant Rheumatologist

The catalyst for this group was really a navy wife who lived in a rural part of Devon without parental support. She was a lady whom I have been seeing with arthritis and who was very keen to get pregnant but once pregnant was rather concerned about how she would cope with the newborn baby on her own.

I am glad to say that she has had a lot of support from within her community and from friends but there is nothing like having someone who is suffering similarly to bolster one’s confidence especially if the other person is coping well. I hasten to add that this woman’s husband was very supportive but he was away at sea for quite long periods and even when he was shore-based, this may well have been a day’s drive from home. In essence she had to cope with the new baby on her own. Because of some of the difficulties she was having, we decided to admit her to the ward with her baby to get to know the physiotherapists and the occupational therapists. She was understandably distressed but I believe this was very much linked to the loneliness of having to endure her problems without the support of others.

I had other young mothers with similar diseases and asked them about the problems they were having with their arthritis and looking after their babies. I asked if they would mind meeting my patient who was in distress and that is really how the group started. We have got more than one diagnosis as far as the arthritis is concerned but the common thread is that all the members of the group are pregnant or young mums. There have been all sorts of problems that the mothers have encountered together and the atmosphere of sharing the problems has been therapeutic for them and educational for us.

As the group has grown it meets at the hospital because it is a central area. The mothers come down for treatment in the physiotherapy department and through the help of the physiotherapist, the group continues to meet. The interesting thing to us as professional observers is that you really need one dominant mother to lead the group. This is not something that is imposed but a leader tends to emerge. With the appropriate momentum I think the group will go on for ever.

Dr Sarah Rae, Consultant and Senior Lecturer in Rehabilitation Medicine

My role in the Initiative is to provide the medical information relating to the effects of pregnancy and childbirth on arthritis and the effect of the arthritis on pregnancy and childbirth. I do this through talks to the group, to other professionals in the hospital as well as to Individual women.

The commonest question I am asked by women with arthritis is “I want to get pregnant, what should I do about my arthritic drugs?” After that, the questions relate to the type of delivery, management of pregnancy and postnatal support. The three most common rheumatological conditions that we see are Rheumatoid Arthritis, Systemic Lupus Erythematosis and Ankylosing Spondylitis and the answers to women’s questions differ with each.

The published literature on Rheumatoid Arthritis (RA) suggests that 80% of women with RA seem to experience a remission during pregnancy with the greatest rate of remission seen in the first trimester and the lowest in the third trimester. Even those who experience a remission quite often experience a recurrence two to three weeks after delivery. With regard to fertility there are conflicting data - many women do seem to experience difficulty in becoming pregnant but there is no firm evidence as to whether this is related to the condition itself.

Once women become pregnant, the Rheumatoid Arthritis does not appear to have any harmful effects on the foetus nor does there appear to be any less likelihood that the baby will be carried to term normally. The literature on the safety of drugs is also lacking but the current consensus amongst many rheumatologists is that if drugs are required, steroids are the most preferable, with sulphasalazine also being widely recommended.

Systemic Lupus Erythematosis (SLE) is very different from Rheumatoid Arthritis. It does create fertility problems, with frequent abortions being common. There is also quite commonly an effect on the foetus creating problems with the conducting system of the heart. Women with SLE do not generally experience any remission during pregnancy.

For women seeking advice on becoming pregnant I would counsel them about the sort of problems that may arise but I believe that professionals need to empower women to make their own decisions. If they decide to go ahead then we need to offer support by helping them to become pregnant while not taking medication if possible, by providing good antenatal care, by giving frequent rheumatological advice during pregnancy and immediately after childbirth.

There is very little specific literature on the effects of pregnancy on Ankylosing Spondylitis (AS) but it appears that the effect is very variable from one individual to another. If a remission does occur during pregnancy then there is almost certain to be a flare-up between three and six months after the birth. There does not appear to be any negative effect on the foetus caused by the disease itself.

Such medical information about the effects of disease on pregnancy can help women make informed choices. As a mother of four children myself, perhaps I am more sympathetic to the concerns of women seeking advice about childbearing than a male rheumatologist would be and I certainly have a personal interest in the area. There is too little published information on childbearing and arthritis and I feel it is the responsibility of professionals like myself to do something about this.

Ruth Street, Staff Midwife

I was asked to represent the Maternity Unit at an initial meeting with physiotherapists and occupational therapists from the Orthopaedic Hospital and mothers suffering from joint problems. I was chosen probably because I was diagnosed as having Rheumatoid Arthritis myself about three years ago.

The main difficulties expressed by the women were:

  • A lack of knowledge about the special needs of women with joint problems.
  • A lack of available information.
  • Equipment that was difficult or impossible to use.
  • A fear of asking for help.

Dr Rae, Consultant in Rehabilitation Medicine at Exeter, gave a lunchtime talk to midwives about different joint conditions which was found to be very helpful and informative by everyone. I showed the physiotherapist and the occupational therapists from the Orthopaedic Hospital around our Maternity Unit. It not only gave them an insight into some of the difficulties the women had come across but also gave us some ideas how we could adapt equipment to better suit the women’s needs. One of the main problems was the chairs were mostly too low and some did not have arm rests. The women found it difficult to get out of the chairs especially when they were holding their babies. The planned move of the Maternity Unit will provide an ideal opportunity to incorporate improvements in facilities for disabled women.

My role is to provide a link between the maternity services and the support group. When a mother-to-be joins the group, I introduce myself to her and discuss her and her partner’s needs and concerns. I also give them a telephone number on which they can also contact me.

The midwives work in one of three teams which improves continuity of care and makes communication within the team easier. I introduce the woman and her partner to members of the team who will be caring for her in labour and on the postnatal ward. An individual tour of the Maternity Unit is arranged so that the mother-to-be can experiment with the equipment available on the delivery suite and postnatal wards.

If the equipment is difficult to use, alternatives can often be found. If, for example, the hospital baby crib is too deep for the mother to use comfortably and safely, she can bring in her own crib or Moses basket. A water birth pool is in the process of being fitted into one of the delivery rooms following the initiative of one of the mothers who found it very comforting during her labour.

The support group is very important as often the women feel isolated not knowing anyone else suffering from a similar condition. Kate, who was pregnant when the group was set up, feels she has greatly benefitted from the support and advice the group gave her. Debbie and Pam who are both expecting babies in a couple of months are also finding the group helpful. Pam thinks it will be particularly helpful once the baby is born. I look forward to our care of mothers with joint problems improving further as our experience grows.

Patricia Steeples & Marjorie Scott, Occupational Therapists

We have both been occupational therapists (OTs) at the Orthopaedic Hospital for several years and we have to  say we didn’t realise what difficulties existed for mothers with arthritic conditions until we actually met a pregnant woman and had to try and find solutions to the problems that she encountered during her pregnancy and once she had her baby.

For example, when she could not manage the fastenings on the disposable nappies, we found ourselves writing to nappy manufacturers to find more suitable ones. When she experienced problems managing routine household tasks, we had to look afresh at the strategies and equipment that might help her care for her baby.

As two of the OTs involved in the joint initiative to provide better support for young mothers with arthritis, our involvement has been mainly to do with giving advice on ergonomics and suitable equipment, fitting splints to avoid damaging of joints, and organising for extra care support if necessary. We talk to mothers about things such as the height of furniture at home, availability of handrails on the stairs, suitable chairs for feeding babies. We talk about suitable ways of bathing the baby if you can’t lift the baby easily or get down onto the floor. We look at joint protection (e.g. turning a tap in a way so as to minimise hand deformity and perhaps supplying levers to assist turning.

We also provide, or advise on, equipment which the young mother may need for her everyday living tasks - examples of these being spring scissors which can be used with a very weak grip, built-up cutlery, lightweight mugs, electric tin openers, adaptations to bath brush, hair brush to facilitate reaching those inaccessible areas. We liaise with community OTs to try and ensure that the mother gets the equipment and strategies she needs sorted out in time for the baby’s arrival.

Together with the physiotherapists and midwife we have developed a Joint Protection Plan which gives advice on how to minimise damage to joints in pregnancy and after. It deals with aspects such as posture, sitting, walking,, the importance of protecting hot swollen joints with correct splints and having the splints checked regularly. We have found that the old fashioned vitrathene and plastazote lightweight splints are much more comfortable for mothers who need to carry babies than modern designs even though they are more time consuming to make.

The initiative has led to a direct improvement in the communication between professionals that are involved in the care of a woman in pregnancy and postnatally. One example of this is that OTs can better prepare women for the flare-up of arthritis that often occurs postnatally - the midwife will be in touch with us about when the baby is due and we can make sure we book an appointment to see the mother during her pregnancy but also afterwards when the flare up is likely to happen. We can alert Social Services to take action - for example, to raise cot heights, provide home helps etc. That way we hope to be able to provide the support that the mother needs when she most needs it.

We have learned a lot from talking to the mother’s group. They have alerted us to the problems that the maternity unit posed for them: not having the strength to push the bell for attention; not being able to get on and off examination beds; not being able to turn on taps in the washing areas; or to be able to bathe their babies either because they could not lift/hold them or because the height of the bathing areas was too low; some had difficulties getting on and off the toilet.

The group has also indicated that it values the professional expertise that we might have to offer. Some of the commonest queries are to do with finding suitable equipment such as baby harnesses that are not too fiddly to do up in pushchairs, highchairs and car seats. Sometimes this problem can be overcome by using a large velcro strap with large metal rings attached firmly to the chair.

Others report problems with finding a baby buggy that they can push without pain. Our advice with equipment is not to buy anything before trying out several and to talk to other mothers about what they have found useful. For example, buggies with swivelling front wheels are a lot easier to manoeuvre that those whose front wheels are fixed to only move straight. Adding a strap to one latch on a cot such that only one needs to be undone can help with sliding the cot side up and down - usually two hands are required to simultaneously lift the catches.

Obtaining a safe stairgate that can be opened/removed by a young mother but be secure from a child’s prying fingers is another common challenge. In one instance a stairgate has been designed with a large handle that the mother could manage but which was too big for the baby’s hands.

Some of the problems the mothers experience are to do with other people’s inability or unwillingness to understand the extent of their disability. One mother had a premature baby son who had to spend a lot of time in hospital and the hospital did not make any effort to accommodate her appropriately. The only arrangements that were made for her to stay with her son was a bed on the floor to which she could not get down.

Often the lack of understanding comes from close family members such as husbands and mothers- in-law and the psychological stress this creates may actually exacerbate the pain of the arthritis. Families may find it difficult to appreciate a mother’s need for rest when she has rheumatoid arthritis and put unnecessary pressures on her. Our role in these situations is often a matter of listening to women speak about such psychological stresses - being taken seriously is often a great source of relief in itself. How much we can influence other family members attitudes is not easy. Often it is a matter of giving women permission to be more assertive about their own needs.

The Joint Protection Plan is only a beginning - I feel that there is much more we could provide in the way of information about the nitty gritty of childcare.

First published in Disability, Pregnancy & Parenthood international, April 1994.

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