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The cost of care

Beverley Hopcutt, with the help of Hal Bailey, considers how the Motor Neurone Disease Year of Care Pathway will help commissioners ensure interventions will be in place when needed so that the multidisciplinary team can spend more time with clients and plan to manage symptoms effectively.


ffective symptom management in Motor Neurone Disease is challenging due to the rapid progression and number of problems people with the disease can present with over a short space of time. It is essential for speech and language therapists to work as part of a multidisciplinary team to ensure a holistic approach to management access to the right professional for advice, support and treatment at the right time. While the focus of this article is on a new Year of Care Pathway, this is just one of many useful resources now available to support the quality of life of people with motor neurone disease (figure 1). In its quality requirements, the National Service Framework for Long Term Conditions reinforces the consensus that multidisciplinary care is the right approach. However, in the world of commissioning, costs of service provision are coming under closer scrutiny. The current system in England of payment by results focuses on payment for procedures or outpatient attendance. It does not cover the ongoing health and social care costs of people with long term conditions, whose treatment does not fit neatly into an episode of care and where best practice is for ongoing contact with services. With motor neurone disease being such a rapidly progressive disease with complex symptoms, there is a case for saying that, if practitioners can get it right here, then managing other long term neurological conditions will be simpler. Ideally, commissioners (GP, Primary Care Trust, social care) need to ensure that a comprehensive package of care is commissioned over a period of time. This means current and anticipated healthcare needs are planned and budgeted for so care can be delivered in a timely manner as needs arise without having to constantly refer back to the commissioner for approval for funding. In future, these costings could be used to support the provision of a personal health budget to be held by the client, as direct payments and individual budgets for purchasing social care are currently. The concept of a year of a care was originally piloted in diabetes and, more

recently, in motor neurone disease by the MND Association in collaboration with Leeds PCT and Leeds Adult Social Care. The year of care pathway tool outlines the health and social care services that an individual with motor neurone disease will need to access dependent on the symptoms they develop and how these progress. The services are described for costing purposes in terms of staff time, equipment and other consumables such as medication. Having assessed current need and produced a care plan, an experienced practitioner should be able to predict likely disease progression. Using the tool, they can then create an anticipatory care plan with costings for the year ahead.

the professional is encouraged to plan ahead and raise issues with the person with motor neurone disease in a timely manner Applications
For speech and language therapists the Motor Neurone Disease Year of Care Pathway has a number of applications. Firstly it outlines all of the multidisciplinary inputs available for symptom management. This helps practitioners to understand others roles and contributions, and to notify and make timely referrals to the relevant services as new difficulties develop regardless of whether or not they are a designated keyworker or care coordinator. The pathway also describes the multifaceted speech and language therapy role, with our involvement in the management of communication, dysphagia and sialorrhea (excess salivation). It can also help with the prediction of symptom progression and what to expect in the future, so the professional is

encouraged to plan ahead and raise issues with the person with motor neurone disease in a timely manner. This ensures that services and equipment are in place in good time for when they will be needed. It means too that sensitive issues such as advance directives to refuse treatment such as gastrostomy insertion can be discussed at a time when the client is still readily able to communicate and make such decisions (figure 1, no.10). Speech and language therapy managers might also find the tool useful for benchmarking their local service costs. The Year of Care Pathway tool can act as an alert for symptoms which portend the need for other involvement. This might include onset of respiratory problems requiring non-invasive ventilation. There is a useful checklist from the MND Association outlining symptoms of respiratory failure, indicating possible need for non-invasive ventilation and for cough assist (figure 1, no.2) due to weak cough and secretion retention. While the tool highlights the importance of multidisciplinary team input, including multidisciplinary motor neurone disease clinics, it also demonstrates the high costs of such care. It is unlikely that an individual would need every health intervention in one year but, if this were the case, it would cost about 198,459 based on the year of care for an individual with advanced disease, with an additional 82,900 needed to fund equipment. So how much does a year of speech and language therapy input come to? a) Communication Many people present with bulbar motor neurone disease which is frequently misdiagnosed, often as a stroke. It is only as symptoms progress despite dysarthria therapy that a neurological opinion is sought and diagnosis confirmed. Only post-diagnosis speech and language therapy intervention is included but, at 39 per monthly session equating to 468 per year, it could be a challenge to meet all communication needs including the training of the individual and their key communication partners to use communication aids. However, the suggested costs of 8,200


Care pathways Figure 1 Motor neurone disease resources 1. Motor Neurone Disease Year of Care Pathway See main section of article. Available at http://www.mndassociation.org/for_professionals/sharing_good_practice/mnd_year_ of_care.html. Additional downloads include equipment costs, services and learning from the development of the tool in Leeds. 2. Cough assist This device, more frequently used in cystic fibrosis to assist secretion clearance, is being used to aid people with motor neurone disease to expectorate secretions. It can be particularly helpful for those individuals who are experiencing prolonged coughing episodes as they attempt to clear secretions, resulting in extreme breathlessness and often triggering an Accident & Emergency attendance and possible admission to hospital. Assessment for cough assist is usually provided by specialist respiratory centres who also offer non-invasive ventilation. 3. Swallow reminder badge This badge delivers a sound at a preselected time interval to remind the individual to swallow their saliva. With prolonged use, anticholinergic medications prescribed to reduce saliva production seem to become less effective, and the badge can be helpful in delaying the introduction of medication. www.winslow-cat.com 4. Professional Respiratory Checklist Cards This is a handy pocket-sized checklist to remind the practitioner about the symptoms suggestive of carbon dioxide retention (an indication of respiratory failure), and the need for referral for consideration of non-invasive ventilation. www.mndassociation.org 5. The Grid 2 This software package can be loaded onto standard desk and laptop computers. It enables switch users to easily access all of the functions they would normally use on their computer plus use it as a communication aid. www.sensorysoftware.com 6. Drinkup This new drinking device is designed to enable more physically dependent individuals to drink via a straw without the assistance of carers when seated or in bed. The system accepts any household cup, mug, glass or drinks can. For larger quantities of liquid, Drinkup has also been designed to take a standard NHS drinks jug, together with a modified lid. www.drinkup.uk.com 7. Sl drinks Hot and cold drinks are available in a variety of flavours in the three fluid consistencies recommended in the National Descriptor Guidelines for Texture Modification in Adults (syrup, custard and (cold only) pud8. Biotene Dry Mouth Toothpaste This non-foaming toothpaste can be helpful for people with bulbar motor neurone disease who are no longer able to rinse and spit out when cleaning their teeth. www.biotene.com 9. Botox There is an increasing research evidence base for the use of botulinum toxin injections into the salivary glands to reduce intractable excess salivation which is no longer responding to anticholinergic medication. Giess, R., Naumann, E. Werner, Riemann, R., Beck, M., Puls, I., Reiners, C. & Toyka, K. (2000) Injections of botulinum toxin A into the salivary glands improve sialorrhoea in amyotrophic lateral sclerosis, J Neurol Neurosurg Psychiatry 69(1), pp.121-123. 10. Advance decision to refuse treatment It is important that people living with motor neurone disease make informed decisions about future symptom management options (for example, their choice as to whether they would want to have a feeding gastrostomy in the face of increasing dysphagia, non-invasive ventilation if in respiratory failure, or invasive ventilation in the case of a respiratory arrest) and that they record these decisions in a way that their wishes can be carried out legally. Speech and language therapists can play a role in introducing these discussions, and facilitating communication. If there is evidence of early cognitive changes associated with the motor neurone disease, it is important that these discussions happen early on. The National Council for Palliative Care Guide for Health and Social Care Professionals is a useful resource. http://www.endoflifecareforadults.nhs.uk/eolc/files/NHS-EoLC_ ADRT_Sep2008.pdf 11. Understanding My Needs Booklet Many people with motor neurone disease report poor management of their neurological symptoms when admitted to hospital or other care settings such as respite due to professionals lack of knowledge about motor neurone disease and how the individual wishes to be cared for. By having this form completed and up-to-date, this information can be readily communicated to caregivers in the event of a planned or unplanned admission. Available from www.mndassociation.org 12. Computer Accessibility A number of adaptations can be made to any computer through the Windows accessibility programme and wizard to make it easier to use for those with a disability. These include changes to key responsiveness, keyboard shortcuts for those who have difficulty using a mouse and changes in cursor size/colour. The programme is accessed as follows: 1. Click on the START icon 2. Click on All Programmes 3. Click on Accessories 4. Click on Accessibility 5. Click on Accessibility Wizard 6. Activate the options that you think might make the keyboard and computer easier to use.

ding consistencies). The easy to prepare drinks are supplied as powder in a plastic cup to which hot or cold water is added and then stirred to achieve the desired consistency. Blackcurrant, lemon, orange, white coffee and chocolate are available on prescription in the community, and can be helpful in overcoming the issue of carers adding thickening

powders to drinks being viewed as administering medication. A standard consistency is achieved, eliminating variability. www.slodrinks.com


care pathways
for the purchase of a variety of communication aids for the duration of the disease could be argued to be overgenerous. b) Dysphagia With the onset of swallowing difficulties there is the need for regular review, advice on compensatory strategies and modified consistencies, and education of formal and informal carers. Objective assessments such as videofluoroscopy or FEES (fibreoptic endoscopic evaluation of swallowing) are not listed as routine, but may be needed in some cases. c) Sialorrhea Difficulty controlling saliva co-occurs with dysphagia, and the speech and language therapist is often involved in assessment and advice about symptom management, including use of medication and provision of equipment such as a swallow reminder badge (figure 1, no.3). These are not included in the core medication and equipment costings. This all suggests that, while the initial 281,359 might have sounded high, in reality it could prove challenging to meet all client needs within cost. The Motor Neurone Disease Year of Care Pathway is useful for practising speech and language therapists, speech and language therapy service managers and commissioners, but what about the client perspective? I asked Hal Bailey what difference it would have made had it been available to him. Bev: What problems have you experienced trying to access the appropriate services/ equipment using the current system? Hal: Although I am happy with the NHS provision of service, without the financial support of the MND Association for certain items of equipment I would be struggling. The provision of equipment tends to be basic with little choice or consideration of the individuals circumstances. There are two instances where the equipment I was offered wasnt ideal for my situation. The first was my communication aid. Having tested the one offered by the NHS it was large and bulky and not practicable for my current lifestyle. Because I use two sticks I was looking for a communication aid which I could easily carry in my pocket, and which was quick to use, the hand held unit from Possum answered my problems. The NHS solution was large and bulky and this alternative solution was funded by the MND Association. The second issue was the problem of getting out of bed. The option suggested by the NHS was a mattress lifter, which would be fine if I slept in a hospital bed, but as a couple we are determined to keep life as normal as possible. Again the MND Association came to my aid and contributed towards an electric adjustable bed. Bev: How would local implementation of a Year of Care have made a difference to you? Hal: If the funding of up to 7000 for a computer-based communication aid as per the year of care had been immediately available

Photos of Hal and Margaret Bailey by Karen Wright

then it would have been possible for the NHS to purchase my aid without having to wait for funding to be sought from various alternative sources, and without having to access charitable funding. Bev: What do you think about people holding their own budget for services and equipment? Hal: For me, the whole purpose of care is not who holds the budget, but trying to maintain life as normal as possible. If that means holding your own budget then I will take that route. I personally think that it is horses for courses in that it would not suit everyone. Plus there would have to be some form of control on how the budget is spent. If I had a personal health budget I probably would have spent a larger proportion on physiotherapy. Bev: Is there anything else you would like to share with the speech and language therapy readership? Hal: In September 2007 I started looking at what was available to assist me in communicating. I was fortunate enough to be able to research the market place through the internet. At this stage I had not mentioned this to my speech therapist. I found that there were several communication aids in the market place and, as in all walks of life, there is not one solution that suits all. I was lucky enough be able to test a number of the products mainly through a direct approach to the companies selling the products. I also tested the product on offer through the NHS. Had I not been in a position to research the market, I wonder whether I would have ended up with a device that was totally impracticable? I have since spoken to a number of people where the NHS solution is collecting dust and not being used! In my position, I undertake the research so that I can remain as independent as possible whilst try-

ing to maintain as normal a life as possible; not everyone is as fortunate as me to have access to a computer to do this. Beverley Hopcutt is Speech and Language Therapist at the Manchester MND Care Centre, and Therapy Service Manager (Stroke & Neuro) at Manchester Royal Infirmary, e-mail Beverley.Hopcutt@ cmft.nhs.uk. She is also the Department of Healths Clinical Advisor for the Long Term Neurological Conditions NSF. Hal Bailey retired in 2003 aged 57 as Managing Director of a software company, and was diagnosed with MND in 2004. He is newsletter and website editor for the Cheshire Branch of the MND Association, www.mndcheshire.org.


The National Service Framework for long term conditions is available at: http://www.dh.gov.uk/en/Healthcare/ Longtermconditions/Long-termNeurologic alConditionsNSF/DH_4128647. SLTP

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