Transforming MND Care audit Frequently asked questions for health and social care professionals Contents 1. What is the Transforming MND Care audit tool?... 2 2. Why has the audit tool been developed?... 2 3. Is this research?... 2 4. What are the advantages for me and my team?... 2 5. How will the audit improve my professional practice?... 3 6. Does the audit cost anything to do?... 3 7. What resources will I need?... 3 8. Do I need to tell anyone within my own Trust that I am undertaking this audit?... 3 9. How do I collect the data for the Excel spreadsheet?... 3 10. What is the process?... 3 11. How do I collect the responses from patients with the experience survey?... 3 12. We already conduct a patient satisfaction survey regularly. Do I need to use this experience survey for people with MND as well?... 4 13. What is the best way of getting the experience survey completed?... 4 14. If I am fairly sure that we are compliant with a particular aspect of care, but it is not recorded in the patient s notes, can I record this as a yes?... 4 15. Does the standard have to be evidenced by the notes?... 4 16. Are there any Data Protection issues to consider?... 4 17. How long will the audit take to complete?... 4 18. How many patient records should be audited?... 4 19. Is there any help available?... 5 20. How often does the audit need to be done?... 5 21. Is the version compatible with my computer... 5 22. Can I use this audit tool to assess the management of other neurological conditions?... 5 23. What are the audit questions based on?... 5 24. We have significantly improved our service over the last few years. Will the questions relating to diagnosis of people who were diagnosed several years ago skew our results?... 5 1
25. What happens if I just cannot get the data from another service that is part of the pathway?... 6 26. Can I just audit my team, or does it have to be a multidisciplinary audit?... 6 27. It would be very difficult to complete the section relating to diagnosis as we do not have access to the neurologists records. Does this matter?... 6 28. What is meant by the single point of contact?... 6 29. Does a professional need to attend MDT meetings to be considered to be part of the MDT?... 6 30. What does access to a MDT mean? Can this be in the community/inpatient or outpatient settings?... 6 31. What is meant by a nutritional assessment?... 7 32. What is meant by an exercise programme?... 7 33. What is meant by a social care assessment?... 7 34. How can I make it easier to complete next time?... 7 35. What happens to the data I submit?... 7 36. I have a question that isn t answered here. Who can I ask?... 7 1. Q: What is the Transforming MND Care audit tool? A: In February 2016, NICE developed a guideline (NG42) which lays down standards for the assessment and management of Motor Neurone Disease (MND). The Transforming MND Care audit aims to help you assess your compliance with the standards outlined in the guideline. 2. Q: Why has the audit tool been developed? A: Although the guideline was published with a checklist, the MND Association felt that a more formalised method was needed so that professionals could more accurately benchmark their services and make necessary improvements. The MND Association aims to work with statutory services to improve the management of MND. The audit will also enable the Association to gauge the level of compliance with the NICE guideline in different services/areas and enable us to focus our efforts and resources in supporting areas where improvements need to be made. Over time, it will also help us to identify common areas of concern for professionals and enable us to campaign more effectively for better services nationally. 3. Q: Is this research? A: No, it is clinical audit. Please see this link for further clarification http://hra.nhs.uk/research-community/before-you-apply/determinewhether-your-study-is-research 4. Q: What are the advantages for me and my team? A: There are many reasons why professionals may find it useful to complete the audit, for example to: benchmark current performance establish where teams/services can best focus their efforts to improve the outcomes for people living with MND plan cost-effective improvements enhance professional practice improve multidisciplinary working and communication with partner organisations. 2
5. Q: How will the audit improve my professional practice? A: The audit will identify exemplary care. The audit will also highlight the areas where you are not currently meeting the gold standard, i.e. the standards in the NICE guideline. This will give you the opportunity to consider how you can make improvements and be assured you are giving the best possible care to your patients. 6. Q: Does the audit cost anything to do? A: There is no charge by the MND Association to use this resource. 7. Q: What resources will I need? A: Mostly, you and other members of your team will need to set some time aside to be able to do the audit and discuss the results. 8. Q: Do I need to tell anyone within my own Trust that I am undertaking this audit? A: It is advisable to conduct this audit in collaboration with the clinical audit/effectiveness team within your own organisation. They can advise you about any local arrangements or protocols that need to be followed. In some cases, the clinical audit/effectiveness team may be able to assist in conducting the audit. 9. Q. How do I collect the data for the Excel spreadsheet? A: There are two ways of doing this: (a) analyse records of the most recently seen patients (for example, notes of the last x number of people seen in clinic, or in their home). The Audit Print tab can be useful here, as you can print off a number of checklists and use these to manually record responses to each audit question for each set of notes, before uploading the information to the Excel spreadsheet (b) collect the data at the same time as seeing the patient (eg. during a clinic session). Some services already have databases set up, so are routinely using these as a checklist during clinic. If not, you could use the sheet on the Audit Print tab as a checklist during your contact with the patient at the time you see them. 10. Q: What is the process? A: The experience of the pilot sites who helped to develop this audit tool showed us that the easiest way to complete the audit is: agree the size of the sample, and the sampling method (see instructions) agree the names/identifying numbers of the patients whose notes are to be audited collect all the notes relating to those patients in the same place if possible. In some cases, this may mean holding notes back after a clinic. or ask the whole team to complete the audit at the same time, with everyone around the table and the notes/information all in one place before you start. For some widely dispersed multi-disciplinary teams, once you have agreed the sample, it may be better to filter out the questions for each different team member, and ask them to complete their own section of the audit with one person collating the responses. 11. Q. How do I collect the responses from patients with the experience survey? A: Ideally, the experience survey should be conducted with the same patients whose notes have been audited. The surveys can be posted to patients, with a stamped addressed envelope, or completed in the clinic setting, ideally by the patient on their own whilst waiting for their appointment or with help from someone at arm s length 3
from those delivering the care (eg. a clinic volunteer or administrator). We would advise against the professional actually delivering the care completing the survey face-to-face with the patient, as this will skew the responses. 12. Q: We already conduct a patient satisfaction survey regularly. Do I need to use this experience survey for people with MND as well? A: Yes. The experience survey is an essential part of the Transforming MND Care audit. It includes questions that relate specifically to standards in the NICE guideline and are aimed at helping you to assess the extent to which you comply with the guideline. It is unlikely that any patient satisfaction survey you currently use specifically asks these questions. 13. Q: What is the best way of getting the experience survey completed? A: We would recommend that, once you identify your sample for the audit, the survey is completed in one of the following ways: the relevant patients are posted the experience survey, with a stamped addressed envelope and asked to complete and return it to a third party (e.g. your clinical audit/effectiveness team) or asked face-to-face in the clinic by a person who is not directly involved with the person s care, eg. a receptionist, a MND Association clinic volunteer. 14. Q: If I am fairly sure that we are compliant with a particular aspect of care, but it is not recorded in the patient s notes, can I record this as a yes? A: No. Good professional practice relies on full and accurate record-keeping. The best maxim is if it hasn t been recorded in the patient s notes, it hasn t happened. If you find there are generally poor standards of record-keeping, then this may be something you wish to improve by including it as an action in the improvement plan. 15. Q: Does the standard have to be evidenced by the notes? A: Yes even though the HSCP may know that something has been done, they may not always be the HSCPs in that team, and so for continuity it is important the evidence can be seen from the records as this is good practice. By ensuring that the standards are evidenced in notes it can also help avoid oversights or unnecessary duplication. 16. Q: Are there any Data Protection issues to consider? A: You will record year of birth, gender, ethnicity and year of diagnosis for selected patients onto the spreadsheet, simply as reference points for you the professional. Therefore the chances of anyone else being able to identify an individual from this information is small. However, it is worth checking with your Information Governance or Clinical Audit/Effectiveness team to ensure that all possible safeguards are being taken and that you comply with any locally agreed arrangements. 17. Q: How long will the audit take to complete? A: This depends on factors such as for example the number of patients that you audit, the number of different professionals/services involved in the audit and whether your clinical records are collected electronically or on paper. Ensuring that future recordkeeping includes the standards will reduce the time future audits take to complete. 18. Q: How many patient records should be audited? A: You will find guidance on the sample tab on the Excel spreadsheet. The larger the number of notes that are audited, the more accurate the results will be. If you have only a small number of patients on your caseload with MND (for example, you are part of a community-based multi-disciplinary team that has a caseload of ten 4
people with MND) then we suggest you try to audit all of these. For larger services (for example, MND Care Centres or Care Networks) we suggest you use the formula provided which will give a 95% confidence interval and a 10% margin of error. As we move to better data collection through the development of the national MND register, we envisage there may be opportunities to collect data for both the register and the audit using the same methods; this should make it much easier for larger services to undertake the audit. For more information about the MND register, visit http://www.mndassociation.org/mndregister 19. Q: Is there any help available? A: In addition to any practice support and advice that may be offered by your own Trust s clinical audit/clinical effectiveness team, the Association s Regional Care Development Adviser (RCDA) for your area will be able to provide advice and support. A list of the Association s RCDAs can be found on our website www.mndassociation.org/mnd-regional-care-development-advisers 20. Q: How often does the audit need to be done? A: This will depend to some extent on your improvement plan, however, good practice recommends it should be done annually, or as a minimum every two years. In this way you will be able to track changes in the services that you provide (for better or worse) and review your improvement plan accordingly. Even if your service is fully compliant, the audit gives you an opportunity to promote the good standards of care you are providing with managers and commissioners and the general public. 21. Q: Is the version compatible with my computer? A: The software is compatible with Office 2007 and onwards. If you have an older version email audittool@mndassociation.org 22. Q: Can I use this audit tool to assess the management of other neurological conditions? A: The audit tool is based on the NICE guidelines NG42 which specifically identifies the standards for assessing and managing MND. It is therefore not designed to assess the care that you provide for people with other neurological conditions. Having said that, some conditions are very similar, for example Kennedy s disease, which requires similar types of intervention. In the absence of NICE guidelines for these rarer conditions, you may find it useful to reflect on any similarities and the care that you also provide for these rarer conditions by using the Transforming MND Care audit tool. If you do this, please do not include any results with the data that you return to the MND Association. 23. Q: What are the audit questions based on? A: The audit questions are all directly based on the standards outlined in the NICE guideline. 24. Q: We have significantly improved our service over the last few years. Will the questions relating to diagnosis of people who were diagnosed several years ago skew our results? A: The answers relating to diagnosis will only count the responses relating to people diagnosed within the past two years. So, for example, if you are auditing twelve sets of notes, and only ten were diagnosed in the past two years, the compliance data from the questions the Information and support at diagnosis section will only count the data from those ten sets of notes. This should give you a more accurate reflection of your recent clinical practice. 5
25. Q: What happens if I just cannot get the data from another service that is part of the pathway? A: In some cases this will be extremely difficult, but it may give you an opportunity to open up a dialogue with other services. Another example is where the person is referred to a tertiary centre for a second opinion, and then referred back to the initiating neurologist. The guideline states that a person should have a follow-up appointment within four weeks of being given a diagnosis, so the key issue is whether the communication between the referring team and the tertiary centre is good enough to ensure that the patient is being seen somewhere for a follow-up appointment whether in the tertiary centre or the service which gave the initial diagnosis. 26. Q: Can I just audit my team, or does it have to be a multidisciplinary audit? A: MND is a complex disease that requires input from a wide range of professionals. To get a good picture, this audit should ideally be whole system (i.e. from diagnosis right through the course of the disease) and multidisciplinary. This will require good communication between services and there may also be some logistical challenges, for example, notes for patients are likely to be stored in several different places, with a mixture of paper and electronic records. We do acknowledge that some services may find it helpful to conduct the audit for their specific part of the pathway, and we would not discourage this. However most of the benefits that will be realised by conducting the audit are likely to occur where there is communication between different teams and services. 27. Q: It would be very difficult to complete the section relating to diagnosis as we do not have access to the neurologists records. Does this matter? A: Ideally, we would want you to audit the whole pathway from start to finish as this would be the best way of assessing compliance with the guideline. However we do accept that in some cases it may be difficult to get this information. It may give you an opportunity to meet with the neurologists who refer in to your service to gain their agreement to taking part in the audit. 28. Q: What is meant by the single point of contact? A: A single point of contact may be an individual health professional or a team of professionals who will have sufficient information about the individual to be able to answer any questions the patient and/or their carer may have. This may be a MND co-ordinator or specialist practitioner, or a neurology team. The key issue is that the patient is given written contact details so they can make contact as needed if they have further questions. 29. Q: Does a professional need to attend MDT meetings to be considered to be part of the MDT? A: The key issue is whether the professionals work closely together and communicate regularly to ensure the patient receives the best possible care. In some rural areas it may be difficult for all professionals to attend meetings, and their contribution to the MDT may be through providing updates before MDT meetings and receiving notes following MDT meetings. 30. Q: What does access to a MDT mean? Can this be in the community/inpatient or outpatient settings? A: Having access to a MDT means that the patients is able to receive assessment, clinical advice, information and/or treatment from a team of professionals with varying professional specialisms according to the person s needs. This input could be provided within the person s home, within a clinic or as an inpatient. It is implicit this 6
team of professionals is in regular contact with each other to ensure that patient receives timely and appropriate care with no gaps in provision or duplication. 31. Q: What is meant by a nutritional assessment? A: The initial assessment (or screening) could be done by any member of the MDT. It is likely to include a record about whether the person is able to eat a normal balanced diet and maintain a good fluid intake. The assessment may be complemented by written information about the importance of maintaining a good varied diet. It is only when the audit refers to specialist assessment or onward referral that it would be expected that that a fuller assessment is performed by a team member with appropriate training and experience, such as a dietitian or nutrition nurse. 32. Q: What is meant by an exercise programme? A: The guideline recommends that people with MND and their family members/carer should be given advice about exercises that are designed to maintain the range of movement of joints, prevent contractures, reduce stiffness and discomfort and optimise function and quality of life. Any advice given should take account of the person s level of function and tailored to their needs, abilities and preferences. Offering written information about exercises to people with MND at this point, can help to reinforce the advice from the professional and support people to complete their exercise programme. 33. Q: What is meant by a social care assessment? A: The initial assessment (or screening) could be done by any member of the MDT. It is only when the audit talks about specialist assessment or onward referral that it would be expected that that a fuller assessment is performed by a particular team member who has the training and experience to undertake a full assessment. 34. Q: How can I make it easier to complete next time? A: It may be useful to develop checklists to complete at clinic appointments or home visits as reminder of the questions that need to be asked or the interventions to be made. Some services have standardised templates in patient records that can be used. These do not replace an individual patient-centred approach to consultations, but do help to ensure that the key elements are covered. The Audit Print tab provides a printable sheet that can help with this. With the introduction of the National MND Register over the next few months, we are hoping to align data that is required for the register with some of the audit questions in the Transforming MND Care audit. This will enable data to be exported from the register to the audit tool. 35. Q: What happens to the data I submit? A: Once complete, we ask that you send your results to the MND Association at audittool@mndassociation.org. The data is anonymous and cannot be tracked back to an individual patient, so this will not pose any data protection issues. By doing this, the Association will be able to gauge the level of compliance with the NICE guideline in different services/areas and will provide additional intelligence for the Association to help us campaign for better services nationally. Most importantly, it will help us focus our efforts and resources in supporting areas where improvements need to be made. Your data will not be shared with anyone outside the Association without your consent. 36. Q: I have a question that isn t answered here. Who can I ask? 7
A: Please email audittool@mndassociation.org or phone 01604 611770 8