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All the adult patients who were admitted to MPH said the nursing staff had explained, in advance, the need for the admissions.

When Sa's son was admitted for daycare, he was told the aim of the treatment was to bring the swelling down in his knee and he felt Dr Rooney had made the process very smooth. B's daughter had been admitted a few times for joint injections, but she felt she had to put pressure on the staff for the injections to be carried out: "they just send you home and don't take on board what the child is going home with, let alone the parents or home situation".

The three adolescents said the staff explained, before they were admitted, why the admissions were necessary. In S's case, when she was admitted for daycare treatment, the staff said they wanted to monitor her for a full day to see what way her illness affected her.

Information on likely date of admission/waiting time for admission

Three adult patients were usually admitted as inpatients within 48 hours of attending outpatients. In addition, two patients who received daycare treatment in MPH were given their next appointment dates while they were attending for treatment. A had been admitted as an inpatient to MPH from the casualty departments in both the City and Royal hospitals. However, whilst she was admitted directly from BCH to MPH, she usually had to wait longer to be transferred from the RVH.

Whilst Sa did not have to wait long for his son to be admitted to MPH, B felt she had to put pressure on the staff to admit her daughter. Adolescent Two adolescents did not have to wait long to be admitted to MPH: for example, K was admitted four days after her outpatient appointment.

When seen by consultants after admission

Three patients who were admitted for daycare treatment to MPH said they were seen within two hours of admission. Similarly, A was admitted as an inpatient and daycare patient to MPH and was seen by a consultant straight away on each occasion. However, when D was an inpatient in MPH for six weeks in 2000, he only saw a consultant three times during that period.

Sa's child was seen by a consultant soon after admission to MPH. However, on a few occasions when B's daughter was admitted for daycare, she was not seen by the consultant until she was due to have her operation. Nevertheless, when the medical staff thought the child's illness may have been cancer, they dealt with it very quickly.

One adolescent was usually seen by a consultant soon after admission. Another adolescent had been hospitalised earlier that day and had not yet been seen by a consultant. The third adolescent was not seen by a consultant at all when she was admitted for daycare.

Referral to PAMs and other staff after admission

All the adult patients were seen automatically, and quickly, by PAMs staff when they were admitted. Similarly, one patient was seen by a social worker when he requested a visit.

The parents said the occupational therapists and physiotherapists assessed the children whenever this was necessary. In addition, Sa said the PAMs staff were very friendly to the kids.

Two adolescents were assessed by physiotherapists soon after they were admitted to MPH and one of them was also assessed by an occupational therapist on the same day. The third adolescent was not assessed by a physiotherapist or occupational therapist when she was admitted for daycare, but she had not yet been diagnosed.

Explanation of tests in hospital

The tests were explained well to the adult patients: D said the radiographer was very good at explaining a test for osteoporosis to him. Similarly, M said she had an x-ray which was very well explained to her. In addition, A said her 'named nurse' explained everything well.

B said her daughter's scans, x-rays and blood tests were well explained. Similarly, Sa was happy enough with the explanation given for his son's MRI scan. However, both parents had waited several weeks for the results of their children's MRI scans (B's daughter's scan was carried out in RVH).

The three adolescents said the staff usually explained the tests while they were being carried out or afterwards, whereas they would prefer if the tests were explained in advance. S said: "they usually tell you afterwards what it was for".

Information on conditions/treatment

All the adult patients said the nurses were very good at explaining their conditions and treatment to them. In addition, S2 said her consultant explained her treatment to her and the information leaflets provided were helpful.

B said the staff explain more now than they used to.

Two adolescent patients said the staff explained their conditions to them when they were inpatients. In addition, K said both the junior doctor and the physiotherapist explained her illness to her. The third adolescent's condition was as yet undiagnosed.

Provision of written information

All the adult patients had received written information relating to their treatment or medication while they were in hospital, and they found this information helpful.

Although none of the parents had received any written information, two parents did not think this would have been particularly beneficial anyway.

Two adolescents, whose conditions had been diagnosed, had received written information on their treatment.

Advice given on discharge

Three adult patients were advised to ring the helpline in MPH if they had any problems. S1 said when she took a new tablet a few years ago, the effect of it really frightened her, but when she rang the helpline they explained everything. In addition, M was given general advice and exercises to do when she was discharged. However, A felt that when you leave MPH you are very much on your own. She said the helpline was only for information on drugs and was mainly aimed at day case patients.

Sa was given general advice and instructed to contact the helpline if his son's condition deteriorated after discharge. Similarly, B said the staff were very good at giving advice on the care her daughter needed after having a general anaesthetic. However, she was unhappy that whenever her daughter was discharged there was no review appointment made for her, and she was only seen again whenever there was something wrong. She was particularly concerned that her child's leg lengths might change in-between times which would, in turn, affect her gait and spine curvature. She felt the medical staff should say: 'let's bring that child back to review her and see how she's getting on'.

Two adolescents were advised to ring the hospital if they had any problems, whereas the third adolescent, who lived outside Belfast, was advised to contact her GP or physiotherapist locally.

Satisfaction with management of conditions

Four adult patients felt that GPs need more information and training in relation to arthritic conditions. S2 said her GP did not understand the extent of her pain until he started getting review letters. In addition, her GP said he is not up-to-date with the new treatments for her condition. A said the staff in MPH are much more experienced than staff in the City hospital at dealing with her condition. However, she also said: "the medical staff in MPH don't realise that it affects you psychologically as well as physically - that part of their understanding could be increased. I have noticed patients coming in here and getting very depressed and I also get very down, which is understandable".

Sa was satisfied with how his son's condition was being managed in MPH. However, he was annoyed that his GP blamed his son's illness on growing pains and gave him muscle rub. B was dissatisfied with the management of her daughter's condition by staff in MPH and she was told by staff in Great Ormond Street hospital that if she had not fought on her daughter's behalf, she would be both blind and crippled now. She felt she had a hard time getting an eye appointment for her daughter in RVH and if she hadn't exercised and moved her daughter's leg, her ankle would be crippled. In addition, she had to find out for herself that her daughter could be referred to Great Ormond Street hospital. Because K's daughter's condition was undiagnosed, she was concerned that she did not know what to do for her daughter. She still had not received the results of blood tests which were carried out eighteen months previously. In addition, she said she had to inform the school herself that her daughter was suffering from a rheumatology condition.

The three adolescents were satisfied with the management of their conditions by medical staff in MPH.

Improvements needed in the service provided by Musgrave Park Hospital

The adult patients said the staff in MPH are marvellous. In addition, S2 said the staff are run off their feet. However, four adult patients also complained about the porters in MPH and felt they need training. In particular, D said "when they are taking you around in wheelchairs they go straight through doors and bang your legs and they go around corners too fast - (and) hitting against things really hurts my back".

Two adult patients said the hydropool is too small. In addition, H (the adult patient who made comments in writing) suggested that the Nissen Hut where the physiotherapy department is housed is cold and draughty for patients coming from the wards in their dressing gowns. A commented that the food in MPH is very good.

B said the children's rheumatology service has particularly improved in the last year, since Dr Rooney joined the service. In addition, she said: "it is a positive step that the hospital asked for this report, it is a step in the right direction". However, she was concerned that there is no specific funding for paediatric rheumatology services. In relation to her daughter's admissions for joint injections, she found there were problems with the process generally: 'Dr Bell had to borrow theatre time from other surgeons in order to carry out the injections. Because the child is so young she has to get the injections done under general anaesthetic, and this causes problems with getting appointments. So, you could get an appointment in theatre for the following week and then the day before the appointment they will ring and say that it is cancelled. On occasions they didn't even know what knee needed injecting. Now, I stay with her until she gets her anaesthetic. She really had no quality of life, over the sake of one knee and what annoys me is that it only takes one injection and she is okay for a year. In addition, when she gets the injection in the morning she can usually get out by that evening and doesn't have to stay in. But it worries me that she can go home from MPH after having an anaesthetic and there is no follow up, although if she is sick in hospital or there are any problems, they will keep her in'. In addition, she said the RVH arrange your next outpatient appointment before you leave, whereas in MPH they just say 'we'll review you' and you have to wait for a letter. She felt it would be helpful if patients were told their next appointment dates before they left.

As K has difficulty getting to MPH, she felt that provision of transport would help. Similarly, B said the appointment times are sometimes far too early for people who have to travel fairly long distances and she only manages to get there in time because she has a car. She also felt there needs to be more clinic time, as a clinic once a fortnight is insufficient. The three parents said there needs to be a greater level of understanding of the needs of children with arthritis by staff in schools. Specifically, Sa said the staff think the children are faking: "a couple of times when his son was not well at school, they sent him home and didn't inform any of us or anybody and the wee nurse up the road from us met him limping down the road". In addition, B said "the kids don't want to be sick - they put themselves through agony to prove to you that they can do things".

Sa said his son "was bullied because he gets off school so much and the other children think he is faking his illness - a kid came up to him while he was on his bike and punched him in the face and really hurt him". However, K said there is no bullying at her child's school and the staff get the other children to push the kids in wheelchairs. In addition, K said her daughter's school is very well-equipped for children with disabilities. On the other hand, B said her daughter's school is not geared up for kids with disabilities.

The mother of the adolescent who was unable to attend the focus group stressed how important the pain service had been in her daughter's slow recovery: without the pain service she would have to go back to facing the isolation which she often felt. The child sees the Pain Nurse Specialist in MPH whenever she needs to and she is sympathetic and understanding of her needs. She felt that all children who have a chronic painful illness, regardless of whether they are rheumatology or orthopaedic patients, should have access to the pain consultant and pain nurse specialist at MPH. However, she said many other children are not even aware that the hospital operates a pain service.

B said one of the ward sisters was very rude to her when she brought her daughter in for treatment: "I had phoned beforehand and said I needed a wheelchair for her and they said there would be one waiting but this Sister said 'I don't have one'. Then Dr Bell came down and kicked up a fuss and got her one, so I returned it after 3 days and a few weeks later I received a very nasty letter from the ward sister saying that I hadn't returned equipment. The thing is whenever I returned it, the wee nurse said 'don't bother signing it in'. Then another time when it was brought back the Sister was talking about the number of pillows that she used to have, suggesting that I took them. But that was in 1999 - I don't think it would happen now".

The adolescents had no suggestions to make in relation to any improvements that might be needed in MPH.