This plan sets out the Welsh Government’s vision for the population of Wales and what this means for services for people with neurological conditions.
1. Are the areas covered within the draft Neurological Conditions Delivery Plan comprehensive and relevant?
Although the UTA believes the range of delivery themes is a somewhat accurate representation of the six key areas needed to support the care of neurological conditions, there is a distinct lack of mention of the relationship between neurological conditions and issues with bladder and/or bowel management.
We are also fairly disappointed that medical technology received relatively little attention in the document. While there is one reference to medical devices, we feel that given the impact that devices play in the management of conditions, a greater focus on the innovation of new medical technology and greater access to existing appliances will ultimately lead to an increased capability of individuals to manage their conditions independently.
As the Welsh Government may be aware, good bladder and bowel management enables those with neurological conditions, who suffer from continence problems, to carry out their day to day lives while remaining independent. At the same time, poor support leads to an increased reliance on others – not limited to acute health services, but also friends and family. In addition to a loss of dignity, there is also a risk of healthcare associated infections such as urinary tract infections, which are costly for the health services, a danger to the patient, and often avoidable.
The UTA strongly believes that a greater understanding of continence care for those with neurological conditions needs to be reflected throughout the Neurological Conditions Delivery Plan. The rest of this response suggests where these points could be added.
2. Is the vision for neurological conditions right?
3. Are the challenges for neurological conditions services appropriate?
Although the vision for neurological conditions could be seen as implying support for good continence management, the UTA feels that this is something that needs to be explicit. The consultation draft, as it currently is, does not contain a section recognising that those with neurological conditions often receive poor bladder and/or bowel management.
One of the problems that the UTA has identified is a lack of general awareness of continence issues amongst healthcare professionals and the public. We feel that the lack of mention within this document is reflective of this problem.
We are also concerned that there is a lack of focus on need for medical innovation amongst the challenges, especially with regard to the management of neurological conditions. The UTA believes that in order to provide the highest quality of care for patients with neurological conditions, it will be necessary to continuously provide innovative technology in the management of their care.
4. Have we correctly identified the delivery expectations that should be prioritised?
Delivery expectation/s to be added:
For the third delivery theme (fast and effective care), a new delivery expectation should be added stating that referrals should be made to specialist continence services when a patient with neurological conditions is deemed to have a specific continence need.
Delivery expectation/s to be amended:
The UTA believes that delivery expectation 1 and 2 in delivery theme one (raising awareness of neurological conditions) should be amended to state that all staff involved in managing care for people with a neurological condition should also have an appropriate understanding of continence issues. Similarly, delivery expectation two should also include a specific understanding of continence issues.
In delivery theme two (timely diagnosis of neurological conditions), delivery expectation one should be expanded to include prompt and appropriate access to specialist continence services, where appropriate.
In delivery theme four (living with neurological conditions), delivery expectation one should be amended to ensure that people will have timely and tailored access regarding bowel and bladder problems, should they emerge, as well what to do and which service to access to facilitate the management of their condition
In delivery theme six (targeting research), delivery expectation 1 should be amended to recognise that research should extend beyond neuroscience to methods and technologies used in the care and management of the implications of neurological conditions. The UTA believes that the greater the level of research in the implications of neurological conditions, the greater the level of care individuals will receive. As a vast number of people with neurological conditions also suffer from continence problems, it is likely that the impact will be widespread.
5. a) If no, please identify the specific priorities that you suggest need to be removed, added or amended.
Specific priority to be added:
In delivery theme two (timely diagnosis of neurological conditions), a new priority should be added which would ensure that awareness of correct and proper continence care is evidenced amongst healthcare professionals such as GPs and nurses.
The UTA feels that delivery plans must recognise that although there are differences between those who were born with a neurological condition (such as spina bifida) and those who acquire it later in life (spinal injury) both groups are likely to have serious continence needs requiring special support.
In delivery theme 4 (living with a neurological condition), a new priority should be added that recognises that those living with neurological conditions may require the use of urology products. There must also be recognition that urology products must be suited to individual needs as some appliances or more suitable to some people than to others. Support for these people should be necessary.
Specific priority to be amended:
In delivery theme one (raising awareness of neurological conditions), the UTA believes that as well as raising awareness of neurological conditions, awareness should be raised of the implications of neurological conditions, specifically relating to continence management. Those with neurological conditions must feel that they can talk freely and openly with healthcare professionals about their conditions.
In delivery theme 6 (targeting research), delivery expectation 3 should be amended to ensure that academic training schemes ensure that health professionals in the workforce, notably GPs and nurses who do not specialise in continence management, are adept at both identifying and handling patients with neurological conditions who have continence problems.
Are the assurance measures for the NHS to report on to the Welsh Government each year going to capture the effectiveness of NHS neurological conditions care across Wales?
Assurance measure/s to be added:
The UTA believes that more assurance measures should be included for delivery themes three (fast and effective care) and four (living with a neurological condition), which would focus on the quality of continence care for patients with neurological conditions. We feel that by doing so, continence care would be recognised as an important aspect of managing the implications of a neurological condition.
8. Are there any critical issues not covered in the draft Plan?
Although we are pleased that the All Wales Neurological Condition Implementation Group may draw on expertise from various professions involved in providing care for people with neurological conditions, we would like more assurances that suppliers and service providers of continence appliances will have their expertise drawn upon at some point during the delivery of the plan.
We would also welcome greater involvement of patients and users of continence devices with neurological conditions, as ultimately they are people whose quality of life the Plan is intending to improve.
9. How might the draft Plan be improved?
Our general comments were outlined in answer to the first question of the consultation document. To recap, the UTA would like to see a firmer understanding in the draft Plan of the close relationship between many neurological conditions and good bladder and bowel management. Moreover, we would like to see greater willingness of the Welsh Government to involve the suppliers of continence appliances, who we feel are well placed to assist in the delivery of some of the objectives in the Plan.
10. We have asked a number of specific questions. If you have any related issues which we have not specifically addressed, please use this space to report them.
The UTA represents up to 95% of manufacturers and service providers who supply the urology appliance market. An estimated 6 million people in the UK are affected by continence problems. High quality urology appliances allow users to manage their conditions, maintaining their quality of life and independence and avoiding repeated medical consultations.