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Three adult patients had to wait about four months for appointments in either the RVH or Belfast City Hospital. A felt she should have been seen much more often when she was very sick for six months. Similarly, D pointed out that he had not been seen in outpatients in over a year. One adult patient saw a consultant privately.

In relation to waiting times for outpatient appointments in MPH, two parents said their children had not been reviewed in over three months. Sa felt that because his son's illness is such a serious thing it needs to be continually monitored. He felt that Dr Rooney would review children much more often if she had the money and the clinic time. As regards waiting times for outpatient appointments in the eye clinic in the RVH, one parent waited up to 3 months for his child's last appointment.

K did not have to wait long for her outpatient appointments in MPH, and Se was seen every 4-6 months because she did not need to be seen more often. In addition, Ad regularly attended the pain clinic in MPH. As regards waiting times for outpatient appointments in BCH or RVH, K waited more than 3 months for appointments in both hospitals.

Waiting times in outpatient departments

The four adult patients who attended outpatient appointments in RVH or BCH said they usually only had to wait half an hour or less before they were seen by doctors.

In relation to MPH Hospital, two parents said they only had to wait about 15 minutes before their children were seen by doctors. As regards waiting times in the eye clinic at the Royal hospital, one parent said the times varied as her child was sometimes seen within half an hour and on other occasions she waited a couple of hours. Similarly, another parent waited quite a long time for his child to be seen.

One adolescent usually only waited 5 - 10 minutes to see a doctor in MPH, whereas another generally had to wait about half an hour. In addition, one adolescent said she usually waited well over an hour to see a doctor in the RVH.

Grade of doctor seen in outpatients

Three adult patients who attended outpatients were sometimes seen by non-consultant doctors, rather than consultants. However, the fourth patient who attended outpatients was seen by the consultant whenever she asked to see him. Whilst her GP told her to ask to see the consultant, the staff in outpatients did not inform her that she could do so.

Two parents said their children were routinely seen by consultants in MPH and the third parent said she would ask for a consultant if she wanted to see her.

One adolescent usually saw the consultant in MPH whereas the other two adolescents were often seen by non-consultant doctors. One adolescent attended the RVH outpatients on two occasions and was seen by the consultant on both occasions.

Facilities in outpatient departments

The adult patients who attended the RVH outpatients said the chairs are not comfortable for sitting for long periods. In relation to facilities for disabled people, one patient said there are no disabled toilets in the RVH department and, because the doors are very heavy, he found it hard to manage with crutches. However, another patient said there is access to disabled toilets in BCH.

As regards ready access to water, tea and coffee, one patient said there are no such facilities on Level 6 of the RVH, whilst another patient said these facilities are available on Level 3. A and S1 said the facilities in BCH outpatients department were very good generally. In addition, S1 said the staff in BCH would get tea or coffee for a patient if they were not busy.

There were plenty of newspapers and magazines supplied in both BCH and RVH, although there were no televisions in the departments. D highlighted that the staff in the RVH were very friendly. In addition, S1 said BCH has a very good display monitor which shows the names of the nurses who will be looking after the patients and who will answer any questions for them.

One parent said the seating in MPH outpatients is comfortable, whereas two parents said the seating in the RVH is very uncomfortable. Sa said the seats in the RVH outpatients are very badly laid out, so you are squashed into a corner completely away from the receptionist. Similarly, B said she has often been unable to find anywhere to sit in the outpatients department. The same parent complained that the children's outpatients is not located within the Royal Belfast Hospital for Sick Children but, instead, is on Level 8 of the main building.

One parent said there is good access to beverages in MPH, whereas two parents said the access to drinks in the RVH is poor. Similarly, there is no access to disabled toilets in the RVH. B said there are plenty of toys for the children to play with in MPH.

The adolescent patients said the seating in MPH is very comfortable. However, the seating areas in both BCH and RVH are very packed.

Toilet facilities and a vending machine for drinks are close by in MPH, but are not so close in the RVH.

Information on conditions/treatment

Two adult patients who attended outpatients in RVH said the junior doctors had more time to explain things to the patients than the consultant. However, S1 said Dr. Taggart - a consultant in BCH - was very good at explaining things. Similarly, A said medical staff in BCH explained about her illness whenever she asked. However, she also said she used to see a registrar in BCH who routinely examined her joints, but since then the medical staff have only done this when she requested it.

One parent (B) said the staff in MPH outpatients are better at explaining a child's condition now than they were in the past. Similarly, Sa said the staff are very good at explaining his son's condition, although they did not explain his steroid treatment very well - what the drugs were for and what they would do. As K's daughter has not yet been diagnosed, the staff were unable to give her much information about her child's illness. B said the staff often waited to be asked before giving the information. In addition, it is difficult to look after a child and listen at the same time.

In relation to the RVH, S and B said the non-consultant doctors in the RVH were very good at giving explanations. As B was not happy with the attention her daughter received in the RVH eye clinic, the child was subsequently referred to Great Ormond Street Hospital. However, the same parent is very happy now with the attention her daughter is receiving in Mr Magginty's clinic.

The adolescents said the staff usually tried to explain their conditions to them, but they found it was all too much to take in.

Provision of written information in outpatients

One patient said there are information leaflets on conditions freely available in the RVH. However, when S1 attended BCH she was not allowed to take any leaflets on rheumatoid arthritis which would have given her information on pain relief exercises.

Similarly, the parents said there was little written information provided in the RVH in relation to their children's illnesses. However, B said there were leaflets provided in MPH and it was only when she read one of these that she realised her daughter needed physiotherapy and eye tests. She felt that she had to do a lot of research and find out this information herself. Indeed, up until 3 months ago, the eye clinic tried to remove her daughter from their list.

Only one of the adolescents had ever received any written information in outpatients - S was given some leaflets when the staff originally thought she might have lupus.

Explanation of tests in outpatients

One patient said she knew from experience what blood tests were being carried out. However, two adult patients said they did not necessarily know what particular blood tests were being conducted. In addition, A had blood tests carried out two years ago to check for a rare blood disease, but she only found out the purpose of the tests when she got the results three months later. She felt the uncertainty of it all was more frightening than the actual tests. However, all of the patients were receiving methotrexate and they understood that urine tests were being carried out to monitor their kidney function.

Sa said his son's tests were explained to him. However, B said she did a lot of research herself to find out what tests needed to be done on her child. In addition, although K's daughter had tests carried out in Queen's University, she has been waiting since last July for the results.

Whilst the adolescents said the staff explained any tests to them, again, however, they found the information difficult to take in.

Advice on action to take if condition deteriorated

Three adult patients were advised by the medical staff to contact their GPs if they experienced any problems. However, a fourth adult patient who attended the City hospital had not been advised what to do if her condition deteriorated.

Two parents had been given a MPH helpline number to ring if their children's conditions deteriorated, whereas the third parent - whose child was not yet diagnosed - had been advised to contact her GP if there were any problems.

Two adolescents were also advised to contact the helpline if they had any problems during the week (but not at weekends). Similarly, the mother whose daughter was unable to attend the focus group, said she would contact the pain clinic at MPH and if no-one is available, she leaves a message on the answering machine and a staff member contacts her the same day, or the next day at the latest. The third adolescent who attended the focus group was advised to go to her local physiotherapist if she had any problems, as it was too far for her to travel to Belfast. As regards the RVH, S was advised to call into the hospital if she was really sick.

Referral to Professions Allied to Medicine (PAMs) and other staff

Three adult patients who attended outpatients in BCH and/or RVH said they were able to see an occupational therapist or physiotherapist on the day they attended outpatients and were very satisfied with the services provided. S1 also said that if a patient had not been assessed by a physiotherapist in the previous year, the department would follow this up by arranging an appointment. In addition, her physiotherapist told her to ring if she needed anything. However, A said there is a always a waiting list to see physiotherapists and occupational therapists in BCH, and she had to wait 5 - 7 weeks for a physiotherapy assessment for the hydropool.

K said her daughter was referred to the physiotherapist on the same day she was seen by the medical staff in MPH outpatients. Similarly, B said her daughter was routinely seen by the occupational therapist and physiotherapist when she attended MPH outpatients. Indeed, at one stage, the physiotherapist was working with her daughter nearly every day, outside of outpatient appointments. She said the physiotherapists are very good at working with the young ones.

None of the children had been assessed by a clinical psychologist. Only K's child had been seen by a social worker, and this took place on her first visit, two years ago. Although the social worker said she would contact her again, she has not been in touch since.

Two of the three adolescents were regularly assessed by physiotherapists and occupational therapists in MPH outpatients. Although S attended outpatients in RVH, she was not assessed by physiotherapy or occupational therapy staff there. Only one of the adolescents had seen a clinical psychologist and she did not have to wait long for an appointment. The adolescent who was unable to attend the focus group was receiving intensive physiotherapy, hydrotherapy and occupational therapy and her mother felt she got excellent care in these areas. Her mother said the paediatric rheumatology physiotherapists had good knowledge of the illness and were aware of the individual needs of each patient. In addition, where possible, the physiotherapists and occupational therapists worked around her school timetable to minimise her absence from school, and there was no problem if she needed extra sessions.