Each year hundreds of children from across Scotland are treated for kidney failure - a lifelong, life limiting condition which cannot be cured. These children face years of medication and dialysis and an endless wait until a kidney match becomes available for transplant. A transplant is the best possible form of treatment. Unfortunately, children often face a future of being back on dialysis and waiting on a further transplant. There is no cure!
Each year thousands of children across Scotland suffer with bladder and bowel dysfunction and continence problems. THERE IS A CURE IF EARLY DIAGNOSED AND TREATED. Unfortunately, current paediatric continence services throughout many parts of Scotland are fragmented and can be difficult to access. A huge numbers of children with continence problems are being funnelled into secondary care after long delays in either being referred, or waiting for appointments. The lack of provision of an educated workforce results in an inefficient system of missed opportunities for prevention, early under-treatment and growing numbers utilising costly specialist services. This leads to under-provision of services for children with bladder and bowel problems. In severe cases, children with bladder and bowel dysfunction can develop more serious long term complications if not properly treated. Kidney Kids Scotland are determined to make a difference to this service. The Charity has been working together with a team of experts for years to try and help solve the continence problem within Scotland. In the past we have funded, with the help from Trusts like yourselves equipment and post funding for different areas in Scotland. Ayrshire and Arran now have an excellent continence service, as does Glasgow. We are now in a place to help implement a change in other areas to help completely restructure the current service.
Detective work - spotting the problem!
Children who have bladder and bowel problems have often had to wait for many months, sometimes years before their problems are fully recognised and they are referred on to be assessed. Often wetting and soiling, which are commonly the end result of severe bladder and bowel dysfunction, are seen as ‘normal’ in children - even when they are well past the age where they’d normally be clean and dry.
Stopping the harm – understanding the dangers…
These kind of problems cause both physical and emotional suffering for both children and their families. It is not at all uncommon for children with bladder and bowel problems to have serious issues with self-esteem, mental health and poor physical health. These children are sadly also more at risk of being neglected or abused and are more likely to have other developmental problems.
Help to recover – back to health!
With the right help, children with bladder and bowel problems can almost all make a full recovery and get back to enjoying their childhood!
Prevention better than cure!
If Bladder and Bowel problems are not treated this can lead to the child having Kidney Disease which if reaches a certain level has no cure.
Problems that need a solution
- lack of early recognition and intervention in childhood continence problems in pre-school children by parents and/or health professionals
- lack of adequate medical understanding of paediatric continence problems and sub-optimal treatment in primary care (time constraints and training)
- lack of availability in many areas/health boards of appropriately trained and community-based continence nurses
- withdrawal of school-nurse led enuresis clinics with no alternative plan to cover this workload
- stigmatisation of continence problems and lack of public education with reluctance to seek help
- overwhelmed secondary care services- long wait times for appointments
- lack of equity of service provision in secondary care
What is the plan?
Dundee is one of the worst affected areas and the Charity have now agreed to fund a Band 7 Paediatric Continence Specialist Nurse for the next 3 years @ Salary: £60 724 per annum. Providing full funding for the first year and then 50% for the second and third year. We also have a written agreement from the NHS that this service will be fully funded and continue after the three years. This nurse will completely change the pathways and restructure the service to provide quicker more efficient care for our children and with these new pathways demonstrate the huge cost saving potential.
The new Paediatric continence Nurse specialist post will implement the following essential strategies to reduce the burden of pathology and treat those that do develop continence problems adequately
- early screening
- advice on fluid intake and toilet training
- train parents and professionals to recognise emerging continence problems
- early intervention by continence nurse/GP in community setting
- screening on school entry for continence problems
- clear referral criteria for secondary care
- red flag approach to recognising co-morbidity
- special provision for children with special needs
- invest in nurse led services and encourage nurse prescribers - save on consultant costs in secondary care
- ensure adequate provision of highly specialised services for complex cases
- educate, train, research and audit to ensure a sustainable service in the long term
Included in this bid is some new equipment allowing a full service to be set up and run including being able to offer real-time, no wait, bladder and bowel scanning in our clinics.
- Two Bedside, small portable ultrasound scanner which helps with diagnosis and monitoring of treatment efficacy in constipation; can also calculate bladder volumes and assess bladder emptying
- CUBEscan x 1 : allows measurement of bladder volumes without need for complex calculations of manual measurements on the scan image.
- SmartFlow Urine Flowmeter x 1 (wireless) : portable, self-contained flow meter to measure urine flow and detect problems like bladder obstruction, overactive bladder, uncoordinated bladder emptying; used alongside the CUBEscan for complete bladder assessment.
Teaching and Training…
Having this equipment will allow training of specialist nurses and other paediatricians in their use and to really help raise the profile of bladder and bowel dysfunction in the paediatric community. The service will be extended to all parts of this NHS area including Angus ,Perth and Fife. This will allow patients to remain close to home when having their tests carried out and mean that waiting times will be much shorter. The equipment is easy to use and allows accurate diagnosis, aiding parents and children’s understanding and engagement in treatment.
Some children are born with Spina Bifida and have what is called a neuropathic bladder and bowel, which means lifelong problems with bladder and bowel function. Others have abnormalities of the urinary tract, which can result in urine flow from the bladder being blocked. Some children have really severe complex disability and can’t verbalise what they feel in terms of how their bladders and bowels are working. Having this equipment will mean that we can give a better service to all of these children and work with other professionals involved in their care, giving them essential information to help plan their treatment. The Neurology, Plastic Surgery, Paediatric and Gastroenterology colleagues will all be able to utilise this equipment to diagnose children with these conditions.
Total equipment cost £15,737
Total Project cost £137,185
Amount already raised £59,478.95
Outstanding balance £77,706.05
The Charity has agreed to fund this project which will start within the next few months. The Charity has so far ring fenced £59,478.95.
When Dundee is proved successful we will then take this model and move to another area needing the same support.
The last word….
There really are hundreds of children in Tayside, from tiny tots to strapping teens - just like these, who are needing support. A heartfelt thank you for choosing to consider supporting them.
To Establish a Paediatric Home Haemodialysis service for Scottish Children.
This service is now up and running for the first time EVER for Scottish Children
Kidney Kids Scotland are working very closely with The Royal Hospital for Children in Glasgow to establish a home haemodialysis service throughout Scotland. One of the charity’s main goals since its inception in 2000 is to ensure that Scottish children with renal illness receive treatment as close to home as possible. This project is by far the largest commitment the charity has ever taken on, but we feel the difference that it could make to the most chronically ill children that we help would be life changing, not only for the child facing a kidney transplant but for the whole family.
As you may already know The Royal Hospital in Glasgow is the only centre in Scotland that provides a dialysis service to children with end stage renal failure. At present no matter what the child’s postal code they have to travel 3-4 times per week for this life saving treatment which lasts 4 to 5 hours at a time. Some families even have to relocate. Kidney Kids Scotland have supplied, with the help of trusts and people like yourself every haemodialysis machine used within this unit. I am very aware that many trusts have helped fund the Haemodialysis machines used within this unit but I would like to make the point that even after a home haemodialysis service has been fully established within Scotland this unit will still be a huge necessity for Scottish Children. Home haemodialysis will not be suitable for every child but will be life changing for those that are.
Kidney Kids Scotland have been fundraising for the last few years to purchase Home Haemodialysis Machines. We have successfully with the help and generosity of trusts provided two home haemodialysis machines. These have and are now being used as staff and family training aids within the renal department at The Royal Hospital for Children, Glasgow. Taking this project further has been a very slow process which has been delayed by the major hospital move from Yorkhill to the new Royal Hospital for Children in Glasgow. There have also been some serious staffing issues within the Haemodialysis unit in Glasgow which had reached critical numbers. The focus was therefore on the existing service rather than trying to expand the home haemodialysis service. The staffing issues are now being addressed by the NHS and the point has been reached that the home haemodialysis service can now be further developed.
To establish this service involves:-
Funding a clinical nurse specialist to establish the home haemodialysis programme throughout Scotland. This post will not be ward based but will focus on where the dialysis need exists at the time, for example a new patient eligible for Home Haemodialysis within the Highland area. The post will compliment and support our existing home nurse specialists and work very closely with the specialist haemodialysis team within the unit in Glasgow. This nurse will offer the families comprehensive training on one of the Home Haemodialysis machines already purchased by Kidney Kids Scotland in order for them to become confident and self-reliant with the equipment and procedure. The length of training varies, depending on the individual - it could be from 6 to 16 weeks or longer. When the nurse is confident with the family and patient’s ability to carry out this treatment, arrangements by the NHS will then be made for the hire of a home haemodialysis machine for each individual family for as long as is needed. There will be a support team available to the family once home 24hrs per day. The charity have agreed to fund this post for a maximun of 3 years. This post will cost £45,950 per annum.
The science is clear. This reliable, practical, portable home haemodialysis machine will not only be life changing because of the convenience of the child being able to dialyse at home when it suits, but also due to more frequent dialysis has massive health benefits. Please find a comparison between the present in-centre haemodialysis compared with the new home haemodialysis.
Conventional in-centre haemodialysis (The Royal Hospital for Children Glasgow)
- Dialysis centre staff perform treatment
- 3 days per week (MIN)
- 3-4 hour treatment
- Dialysis time scheduled by clinic
More frequent home hemodialysis
- Trained parent and/or carer performs treatment
- 5-6 days per week
- 2.5-3 hour treatment
- Dialysis time scheduled around their life
More frequent home haemodialysis may offer health and quality of life benefits such as:-
- Improved survival
- Much quicker recovery time after treatment
- Better blood pressure control with fewer medications
- Improved appetite and the ability to drink more
- Better mental and physical health
- Reduces stress of the heart
Kidney Kids Scotland Family Weekend
This weekend is open to families from all over Scotland. Places are limited and will be offered on a first come first serve basis.
The weekend aims to provide
* a chance for the whole family to spend some quality time together
* an opportunity for parents/carers to find out more about their child's illness and ask questions in relaxed surroundings
* meet other families who understand
For more information and an application form please phone 01324 555843