Our Response To The HSE Regarding Paediatric & Rheumatology Waiting Times

The Initial Response From The Hse To iCan

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Our Response To The HSE

Thank you for clarifying the Departments of Health’s position in relation to the services that children living with Rhematology conditions receive and your position in terms of resourcing these services in the future. It is useful to get some information on some of our issues of concern and your long term visions. However it is very disappointing that no commitment was made to improve services and we still remain unclear as to what action the HSE intend to take if any ,in the next year ,in the next 2 years and the plan for  the next 5 years in terms of resourcing the currently inadequate services. This is unsatisfactory and we would be very grateful, as a matter of urgency, if you would outline the actions the HSE intend to take in the next service plan -(2017-2018) to improve services? In the following paragraphs we outline the key issues and  the type of detail we require.

 

Firstly we would like to acknowledge our appreciation of the written confirmation that paediatric rheumatology consultants will be kept off the general medicine rota in OLCHC.  This ensures the 1.7 consultants are now available to treat rheumatology patients exclusively.

You state clearly that several submissions have been made by OLCHC to  the HSE for additional funding for paediatric rheumatology services and they have been unsuccessful due to competing priorities we find this entirely unacceptable.  It is unclear to us how you measure priorities when resourcing health care. The following figures (please see attached figures from NTPF) surely provide sufficient evidence that increasing staffing (Consultants ANPs, CNS and physiotherapy) of the rheumatology speciality is a matter of priority

  • There are currently 793 children waiting to see a consultant rheumatologist
  • The national average wait time in 2014 was 125 days
  • The national average wait time in 2015 was 131 days
  • The national average wait time in 2016 was 169 days

However these averages do not take into account children who are waiting for up to two and half years. OLCHC have furnished the media on request with the following data: “There are currently 703 children waiting for an out patient appointment and 103 waiting for in patient or day case treatment and 226 children have been on the out patient list for more than 18 months” {Sunday World 4th June 2017} . These figures are mere numbers the real impact of these waiting lists are children with rhematology conditions are suffering unnecessary pain, permanent joint damage affecting their skeletal growth and long term risks such as physical, mental and vocational disability. Our question is why is this not a priority?

Furthermore when children finally get an appointment and are in the system the current short-staffed  rheumatology team cannot cope with the amount of patients  and activity and there are  unacceptable delays in providing the necessary treatment and monitoring. iCAN have knowledge of many cases where children wait up to 18months to get steroid injections which the standards suggest need be given on the day the need is assessed. Routine appointments are being cancelled  and side effects of medications and deterioration of the child’s condition are not being picked up in time.  An example of  one of these cases is that of Ava Yamakova who suffers from Blau symdrome and is currently on biological agents and methoxtrate, her appointments have been cancelled and rescheduled for 6 months time, this is in the background of a current flare up of her joints. Further more she cannot access an optholmologist even though she is high risk of uvetits. She  also is having difficulty accessing a physiotherpist.  Her mother Orlaith Forde has sent a letter to advocacy services.

 iCAN parents have recently received letters of cancelled appointments with no date of  a reschedule appointment. The reason being stated in these letters is “ the clinic is over-subscribed and due to the insufficent staffing numbers….  Again iCAN ask the question why this not a primary priority when it comes to allocating resources?

 In an email an ICAN  parent received from Minister Harris (Marcella Corcoran Kennedy TD 3rd of May) Minister Harris wrote “The National Clinical Programme for Rheumatology has produced a draft Model of Care for the development of all rheumatology services including paediatric services. The model confirms that there are significant waiting list and access issues for patients with juvenile idiopathic arthritis”

“The draft model identifies that the appointment of an additional Consultant Paediatric Rheumatologist in addition to the establishment of patient clinics at regional centres would be of significant benefit to patients with juvenile idiopathic arthritis, allowing timely and critical care while their skeleton is growing”.

From this communication it appears clear that the Department of Health are aware of the inadequate services and what needs to be done immediately to rectify this for our children.

 Since iCANs meeting with Minister Mc Entee we  have sought meetings with the Rheumatology team, the operational manager and other senior mangers in OLCHC and Eilish Hardiman and her team at St James hospital. At all these meeting these senior professionals and managers agreed that no child should be left in pain and that European standards were not been meet,  They have told us that a business plan to improve services has been submitted for the past two years and no monies are forthcoming from the HSE due to competing priorities. When asked where the rheumatology service was on the priority list in terms of service needs for children ,Eilish Hardiman said they are 5th on the list. We therefore ask the question how many priorites will be funded this year?

 At all of these meetings there was an awareness of  the Model of Care for Paediatrics (2015) while some actions are being taken to reduce steroid injection list,   Inadequate resources in terms of staffing  has  been cited as the key issue.Management at OLCHC suggest that if the service plan that OLCHC submitted is resourced this will improve the care.

It is accepted that Rheumatology is the most rapidly growing speciality in Ireland with the highest number of medical day care patients per year. There has been an  increase in patients by 400%. This number continues to grow as diagnosis and treatment options improve.

The standards set out in the model of care for paediatrics are that “children are  seen within 6 weeks and steroid injections carried out as a matter of immediate first line treatment. There is an obvious chiasm in terms of meeting these standards. Is this not a priority in terms of providing funding?

Similar standards are set out for adults in the  National Rheumatology Programme Draft document. While we accept that all children ‘s care is  important and and we understand that other children services need to be resourced and therefore rheumatology is  5th on the list, we ask the question are the resources  to adult services being prioritsed over the childrens’ services ?   We would like to make the point that while every individuals’ health is important  one would presume that children under 16 would receive priority in terms of  Health care funding . As children are in the growing phase of life and permanent and irreparable damage can occur affecting their entire life span.

The National Clincial Programme for Rheumatology and  National Clincial programme for paediatrics have given clear indications that standards are not been meet which affects the mortality and morbidity of children with living with rhematology conditions. In communications we have received through our public representatives we have been informed that  the model of care will be used to inform estimate submissions in relation to service developments for rheumatology services, including juvenile arthritis. We have recently written to the ombudsman to investigate the care for our children as we believe leaving children in pain and compromising skeletal growth is inhumane treatment.

It is therefore essential that a commitment is made by the HSE and DOH to provide the additional service development funding for paediatric rheumatology in the 2018 estimates and while we appreciate the context of competing priorities we would strongly suggest that this service is a priority based on the figures and evidence of inadequate care aforementioned.

This following services need to be resourced immediately.

  • Ireland has one of the lowest levels of consultant to patient ratios in Europe (2nd lowest – Paediatric Rheumatology European Society data). There are currently 1.7 paediatric rheumatology consultant posts in OLCHC and .5 post in Temple street Ireland. Guidance extrapolated from the British Society for Rheumatology has recommended one paediatric rheumatologist to every 200,000 children. It is therefore advised that there should be a minimum of six paediatric rheumatology consultant posts in Ireland.
  • Two advanced nurse practitioners are required at OLCHC to develop nurse led clinics this would reduce waiting times and allow for the development of transition serviced for our young teenagers.  An Advanced Nurse practitioner (Pain Management) works alongside Dr Lowry at Temple street Hospital and this service has less waiting times than OLCHC. Furthermore there is a need for 2 more Clinical Nurse specialists
  • Up to 70% of children with this disease are from regional areas therefore Regional centres need to be provided
  • An audit and subsequent recommendations were made in a report on Rheumatology services which called for resources of the following Heath care professionals:  3 Registrars, 6 physiotherapists,  Psychologist and Ophthalmologist.

We are seeking an immediate reponse to our request as we in iCan will take all the nessessary action we need to to ensure the care of children suffering with rhematology conditions improves immediately

Your Sincerely

Wendy Costello

Edel McSharry Hughes