Supporting neuro-specialist Allied Health Professionals report of a survey of professionals. September 2015

Transcription

1 Supporting neuro-specialist Allied Health Professionals report of a survey of professionals September

2 Executive Summary An online survey of AHPs working with people with long term neurological conditions was carried out in March April 2015 and was ed to all AHPs with whom the MS Trust is in contact. 272 AHPs responded to the survey. Just over half of the respondents (141) were physiotherapists, 94 were occupational therapists and the remainder were SLTs, dieticians and psychologists. The self-selected nature of the survey respondents means that we cannot and should not use the data to draw conclusions about the shape of the overall workforce. Most respondents work with several conditions, the majority working in more than 6 different conditions and less than a quarter focusing solely on long term neurological conditions. Nearly half the respondents work part time. Of 272 respondents, 128 work part time and the group s WTE value is WTE staff. The group collectively has a wealth of experience, with band 6s averaging 10 years of experience working in neurological conditions, and band 7s averaging 18 years of experience. Overall, the survey paints a somewhat gloomy picture of recent service developments, with 36% of respondents saying they think the service they are able to provide to patients with long neurological conditions is slightly or much worse than a year ago, and only 17% saying it is better. Many teams would appear to have been cut in the past year, with 35% of respondents saying that they have seen a reduction in service establishment, and only 11% reporting an increase. This compares unfavourably to MS specialist nurses surveyed in the summer of 2014, where (in England), 13% reported decreases in service establishment in the past 12 months, but 31% reported increases 1. Many AHPs report a move away from ongoing, long term management of people with long term neurological conditions to an emphasis on short term, episodic care. 45% reported restrictions on follow up appointments or pressure to discharge patients in the past year compared to only 5% reporting more capacity for follow ups. There was some evidence of a move away from specialisation towards more generic working, although the picture was mixed: 11% of respondents reported posts being turned from specialist to generic, but 8% reported new specialist roles being created in the past year. Many AHPs report difficulty accessing ongoing training and professional development. 43% reported reduced access to training and development in 1 Mynors G, Bowen A, MS specialist nursing in the UK 2014: the case for equitable provision. MS Trust

3 the past year compared to only 4% reporting greater access. This was very similar to responses from MS specialist nurses surveyed in Many teams have found that posts are down-banded when team members leave (this had happened in 39% of respondents teams in the past year); fewer teams are subject to downbanding while still in post. This downbanding may reflect a natural process when experienced staff retire or move on, to allow for progression for new, less experienced staff coming in, but may reflect a more negative trend, especially given the reported restrictions on training opportunities and reductions in training posts within teams. Many teams (21% in the past year) report an increase in support workers being employed in addition to AHPs, which may be a positive development if it frees up specialist time to concentrate on highly skilled tasks. There is little evidence of support workers replacing specialist roles. Barriers to funding elsewhere are adversely affecting patient care, e.g. in provision of suitable equipment at the right time to people in the community. The three top ranked actions which respondents said they wanted to see from patient and professional support organisations to support them in their roles are: o Guidance for commissioners/managers on best buys in specialist neurological therapies in terms of cost-effectiveness o A consensus/position statement by our organisations on the importance of neuro-specialist AHPs in long-term neurological conditions o Guidance on how to use outcome measures to track patient outcomes in different conditions In the free text responses, a number of respondents suggested the development of a sustainable caseload model for AHPs. There was also acknowledgement that there is a need for AHPs themselves to undertake more research to build the evidence base for what they do. This work can be used to set the agenda for organisations working with AHPs to assist them in building the case for their roles, supporting specialist practice and recruiting and retaining specialist clinicians. 1 Introduction and methodology People with long term neurological conditions need access to high quality, expert support from therapists to help them manage symptoms and maximise their ability to lead a full and active life. In 2013, the MS Trust published a summary of the evidence for expert AHPs in MS 2. This report highlighted the importance of services and suggested actions which could be taken in order to build the evidence base for, and 2 Dix K, Green H, Defining the Value of AHPs with expertise in MS, MS Trust

4 support, high quality services. However, the report also highlighted that the issues are not unique to MS but cut across neurological conditions, and that many stakeholder organisations will need to be involved in order to take this work forward. Since 2013, ongoing reports have been received of neurology therapy services being either reduced or genericised replacing neuro-specialists with generalists. In February 2015 a collaborative group consisting of the MS Trust, Therapists in MS (TiMS), Parkinson s UK and the MND Association agreed to distribute an MS Trust survey to Allied Health Professionals involved in treating people with long term neurological conditions. The purpose was to elicit a sense of the current state of neurological AHP services in the context of today s NHS. Information about what support neuro-specialist AHPs need from professional and patient organisations was also sought. The survey was drafted by Geraldine Mynors, GEMSS Programme Manager at the MS Trust, and input was provided by the other organisations. Several of the questions in the survey were written to mirror questions asked by the MS Trust in a similar survey of MS specialist nurses undertaken in Respondents were not asked to identify themselves or the organisation they worked for, with the aim of reducing any anxiety which might exist in giving honest responses about services. Details and a link to the online survey (Survey Monkey) were sent to all the Allied Health Professionals on the MS Trust database (1662 people) on 5 March Parkinson's UK made individual contact with therapists. The MND Association distribute the survey via its social media channels. Recipients were encouraged to forward the on to any other AHPs they knew of working in long term neurological conditions. 272 responses were received by the closing date of 3 April Neuro-specialist AHPs have proven to be a hard to reach group as they are very diverse and not represented by a single organisation. Some of the limitations of the results presented here are that: o Respondents were self-selected and therefore their responses may not be representative of the wider workforce. o The high proportion of surveys distributed via the MS Trust mailing list means that MS may be relatively over-represented within the workload of respondents, compared to the wider neurological AHP workforce. 3 Mynors G, Bowen A, MS specialist nursing in the UK 2014: the case for equitable provision. MS Trust There is likely to be significant overlap between these two mailing lists. 4

5 2 The survey respondents There are currently thirteen types of allied health professional recognised and regulated by the Health and Care Professions Council within the UK. Types of AHP who responded to the MS Trust survey were: physiotherapists, occupational therapists, speech & language therapists, dieticians, neuro-psychologists (not technically within the AHP definition), and three others (one therapy assistant and two case managers). No orthoptists responded, although we are aware of neurospecialist Orthoptist roles. The profile of respondents is summarised in table 1. The England-based respondents were relatively evenly spread across all 12 Strategic Clinical Network areas of the country. In the remainder of this report, responses from professions other than Physiotherapists and OTs are only analysed where this makes sense: in many cases the number of respondents was too small to be able to draw meaningful conclusions. Table 1 Respondents by professional and country Engla nd Wales Scotla nd N. Ireland Channel Islands TOTAL Physiotherapist Occupational therapist Speech and language therapist Dietician Psychologist Other / not stated TOTAL Table 2 Respondents by employer type Neuroscience Centre 5 Other NHS hospital NHS Community provider Local authority Voluntary sector Private provider of NHS / LA services Privat e sector >1 empl oyer Physio OT SLT Dietician TOTAL There are 31 Neuroscience centres in the UK, defined by the co-location of neurology and neurosurgery. 5

6 2.1 Work setting and contract The survey asked respondents to say where they saw patients. Strikingly, the 14 respondents working in neuroscience centres reported that they see patients only in a hospital setting. Of those working in other NHS hospitals, 30% of physios and 50% of OTs reported that they see patients in their own homes as well as in hospital. Of those employed by community providers, 83% and 84% of physios and OTs respectively undertake home visits. It is unsurprising that 94% of local authority employed occupational therapists see patients at home, with a minority seeing them in nursing homes and other settings, as their role is linked to housing and equipment services. 40% of community employed physios and 29% of community employed OTs see patients in nursing homes, whereas this was rare for hospital employed staff. Respondents reported a variety of other places where they see patients, including workplaces, community venues, sheltered housing centres, day centres and community gyms. Respondents were asked whether they were on a fixed term or permanent contract. Overall, 89% (233 out of 263) reported that they were on a permanent contract. 2.2 Full time vs. part time working As figure 1 shows, most physiotherapists who responded are working part time, however, more of the other AHPs who responded work full time. The average WTE was 0.58 for part time physios and 0.67 for part time OTs. As this was a self-selected sample it may not be wise to draw too many conclusions. The fact that so many of the workforce are part time may present an additional barrier to AHPs getting involved in research activities, or alternatively could present increase opportunities for part time secondments and internships to undertake research, with the cost for backfilling staff undertaking research being lower than for full time staff. 6

7 Figure 1 Full time vs part time respondents 2.3 Pay bands vs. experience Most of the physiotherapist respondents reported being a band 7, with band 6 being the next most common. For occupational therapists, band 6 was the most common band, with nearly equal representation from band 7s and a few band 5 and band 8 practitioners. Speech and language therapists were evenly represented across the bandings, and dieticians were mostly band 7s. It s difficult to know how representative this data is of practitioners in neuro-specialist therapies. Comparative data is hard to come by, but an NHS Scotland survey of occupational therapists indicated that, by a long way, the most common banding is a Band 6 for occupational therapists ( This may indicate that the respondents to our survey are disproportionately experienced and specialised, and may not be representative of the therapy workforce that many people with neurological conditions encounter. 7

8 Figure 2 Respondents' pay bands Respondents were asked how many years experience they had, by their banding. Results shown in figure 3 are unsurprising, in that more experienced AHPs are, on average, more likely to be employed at a higher banding. Figure 3 Years experience by band - all respondents 25.0 Ave years experience by band - all AHPs Since qualifying In neurology no band given Respondents were asked to give their job title. This question was designed to elicit how many of the AHPs responding to our survey are employed to be either MS specialists or neuro-specialist therapists. As figure 4 illustrates, ten each of the physiotherapist and occupational therapist respondents hold jobs with MS specialist therapist in the title; a majority of physiotherapists, occupational therapists, speech & language therapists and a minority of dieticians are employed in roles with neuro(logical) and/or specialist in their job title. None of our respondents were in other condition-specific roles besides MS, although two mentioned stroke within 8

9 their job title. A significant number of respondents are employed in roles with other job titles. Figure 4 Respondents job titles Respondents were also asked how long they had been qualified, and how long they had worked with neurological conditions (figure 5). Without exception, everyone had been qualified longer than they had worked in a neurological role, with the greatest absolute difference was seen in AHPs who were working in a specialised MS role. This may indicate a career progression from generalist to neuro-specialist to MS specialist. 9

10 Figure 5 Years qualified by job title 3 Conditions treated by respondents 3.1 Neurological vs. non neurological conditions The survey asked respondents to state what proportion of their clinical time they spend treating different conditions. When results are broken down by AHP (figure 6), it is clear that, whilst all respondents have sufficient interest in MS or another neurological condition to be part of our mailing lists, most respondents do not specialise in a single neurological condition, and the majority treat non-neurological conditions a well (despite the fact that most people have neuro specialist in their job title. Of 14 respondents who said they worked with only one condition, all specialise in MS, but this may reflect the way in which the sample was recruited to the survey. Of 8 respondents who said they work with two conditions, all work with MS and the other condition varied including Parkinson s, MND, stroke and other progressive and non-progressive conditions. 10

11 Figure 6 a, b and c Respondents by types of conditions treated 11

12 4 What is happening to neuro-specialist AHP services? Respondents were asked to say whether they had experienced a number of negative or positive events in the past 12 months, from a list of options and to state, overall, whether they felt that the service they are able to provide to people with neurological conditions has improved or deteriorated in the past year. Beginning with this overall question, the results are shown in figure 9 and show a mixed picture. Amongst physiotherapists, 35% of respondents feel that things have deteriorated, but 20% stated that their service had got a little or much better. OTs had a more negative view, with 42% stating that things had got worse, and only 11% that things had got better. Figure 9 Overall changes in the service to neurological patients in the past year When we compare the good and bad things which respondents have experienced, we can understand some of the reasons for these overall responses. 12

13 Figure 10 Positive and negative service developments in the past 12 months (overleaf Positive experiences in the past 12 months Negative experiences in the past 12 months 13

14 Figure 10 Positive and negative service developments in the past 12 months (overleaf Positive experiences in the past 12 months Negative experiences in the past 12 months 14

15 Physiotherapists Restrictions on training and development was the most common negative pressure on physiotherapy services, experienced by 44% of respondents, with less than 3% reporting more time for development. Nearly 23% of respondents reported reductions in training posts, with only 5% reporting that new training posts had been created within their team, suggesting overall a move away from neuro-specialism. Pressure to discharge or limits on follow up for people with long term neurological conditions was reported by nearly 38% of respondents. Around 15% of respondents reported that posts had been down-banded while people were still in post, and a further 38% of respondents had observed this when someone left the team. Again, fewer than 3% had seen posts upgraded. That there is a move away from long term care of people with neurological conditions seems clear from the nearly 40% of respondents who consider that there is more pressure to discharge patients from care and that follow up is being limited. Interestingly, though, only a minority (15%) said that restrictions on home visits had happened. Occupational therapists Occupational therapists reported similar concerns to physiotherapists, but in but in even larger proportions. Half of respondents (51%) reported increased pressure to discharge, or limits on follow up, with nearly half (47%) reporting restrictions on training and professional development, and nearly a quarter (24%) reporting a reduction in training roles within the team, again with far fewer reporting expansions. Other significantly negative events are cuts to services nearly 40% report a reduction in posts in their team and the same number that posts had been downbanded when people left, compared to only 5% who had seen posts upgraded. Just over 20% report restrictions to home visits as against less than 10% who said that there had been increased capacity for home visits. Speech and language therapists There was a small response rate from speech and language therapists which may need to be taken into account when assessing what they said. 13

16 Among respondents, speech and language therapists had had particularly negative experiences. 63% report pressure to discharge and limits on how far they are able to follow up their patients. Nearly half (47%) report that posts had been downbanded when people left the team, with 35% of respondents reporting that teams are being reduced in size (compared to 13% who had seen an increase). This may explain the pressure to reduce treatment duration. 40% also report restrictions on training and professional development, with just over a quarter (25%) reporting a reduction in training roles in the team and the same number reporting restrictions on home visits. More positively, no SLTs reported any move to change speech and language therapists from neuro-specialists to generic workers, none are reporting any experience of posts being down-banded while people are still in the team, and only 6.7% report support workers being used to replace existing AHPs. A minority of speech and language therapists report positive developments. Around a third report that more support workers are being employed in addition to existing AHP roles. Unusually, one fifth report that new specialist neurological roles are being created. 13.3% report an increase in training roles within the team and the same proportion report an increase in the number of posts in the team. A very small proportion, 6.7%, report posts upgraded, more capacity for follow up appointments, and increased capacity for home visits. Dieticians Again, the response rate from dieticians was very small, therefore, proportions represent only a few responses. The largest response for negative events came with 40% of respondents stating that posts had been down-banded when people left and none saying that posts had been upgraded. 20% of respondents have experienced a reduction in the team and 30% reported more pressure to discharge patients/limits on follow up allowed. By contrast with the other AHP professions represented, dieticians only had one positive area to report, that of increased numbers of support workers in addition to existing AHP roles, which was reported by 20% of respondents. A comparison by country, figure 11, illustrates that most respondents are gloomy about the state of services in all four nations of the UK, with a poorer picture in Scotland and Wales (albeit with a small number of respondents) than other parts of the UK. Overall, the proportion of negative reports is slightly higher for Scotland and Wales than for England or Northern Ireland, but the small sample sizes in these countries meant that this is unlikely to be significant. 16

17 Figure 11 Balance of good and bad 'events' by country Overall, there is no significant difference between the professions in terms of the balance between positive and negative events (figure 12). Figure 12 Balance of good and bad 'events' by profession 17

18 Looking at the responses from all of the professions together, it is clear that the significant common areas of concern are: Reductions in opportunities for training and development, and reductions in training posts Restrictions on long term care, and increasing pressure to discharge patients from services Posts being down-banded when people leave the service Reductions in service establishment. The reports of increasing numbers of support workers employed in addition to qualified staff are a positive development, provided that in the long term these roles do not pave the way for additional reductions in specialist posts. 5 Qualitative responses working in today s NHS The final question of the survey asked Is there anything you would like to tell us about what it s like to work as a neurological AHP in today s NHS, and what you think our organisations could do to help you in your role? Responses have been roughly grouped into the following areas. Many respondents covered several areas in their responses. Consequently, this is a qualitative snapshot of current AHP experience in providing services for people with long term neurological conditions. Generic working In some settings, there is a definite push towards a loss of specialism and more generic working. 15 responses covered the move towards generic working. Typical responses are: the tendency is to work generically and respond to acute presentations (occupational therapist) my role as a community OT has become increasingly more generic over the 4 years I have been in post (occupational therapist) there is a real risk that we will lose our specialty and become generic workers, especially with changes to HSCP and integration (occupational therapist) Even amongst people who made positive comments about their service, there was a perception of an underlying threat to specialisation: I think my team offers a brilliant service to people with long term neurological conditions, people report being supported, and value the importance of having 18

19 expert advice at the end of a phone: means much less visits to the GP, and saves hospital admissions. However in today s age of cut backs, we are always very concerned that we will be seen as too costly a service (our experienced staff are mostly paid at band 7 level), and have the constant threat of being combined with generic teams, as our own organisations do not seem to understand the role we do. (occupational therapist) Notably, one respondent (in a large neuroscience centre) made an important comment about banding, highlighting the distinction between focus in a single area to develop expertise vs. seniority and length of tenure. Although in our Trust we have agreed that it s essential to have specialists available to support and educate more generalist staff, these specialists can actually be lower grades of staff with the right support networks so we are introducing some B6 PT and B6 OT posts in the team alongside the B7 and B8a but they will specifically work in LTCs so will develop the specialism. Difficulties with management Many respondents reported a lack of support from managers and understanding of the AHP role. 16 responses covered this issue. Sample comments include: much less support and interest from managers. All numbers based not quality (physiotherapist) I feel a big concern is that the managers above us do not realise that there is value in specialist therapists in neurological conditions. (physiotherapist) undervalued and quite often unrealistic KPIs. Need better skill mixes to deliver services. (occupational therapist) Two respondents specifically mentioned barriers between management and commissioners: We are not encouraged to deal with any commissioning/ccg/strategy issues, merely deliver client care and whilst 'engaged' in the process, this is more telling us what needs to be don (occupational therapist) We are now managed by nurses who don't understand and frankly aren't interested in understanding our role. We are not encouraged to speak with our commissioners. (physiotherapist) And one direct experience of difficulties with commissioners, from a communitybased AHP: More work needs to be done with CCG as services are structured to increase the profile of this client group. One of our local CCGs only took notice last year after a patient threatened legal action regarding provision of FES! [Functional Electrical Stimulation] (physiotherapist) 19

20 Move from long-term intervention and support for people with neurological conditions to short-term episodic care Many respondents reported being less able to provide the type of service that they might wish. In particular, there is a reported trend away from ongoing care for people with long term neurological conditions to providing episodic care. Typical comments include: We have an increasing caseload of those patients with a long term neurological condition but no long term team to ensure their needs are met. These patients are seen by the same therapists as patients who have short term achievable goals over a 6 week period. There is a need for a specific team to monitor the long term needs of these patients : a regular review scheme, annual home visits, quick access back into a service if required, rather than needing to be re-referred and all the admin and time this can take. A keyworker could be allocated from the MDT so that patient has a named worked to contact in times of need. (occupational therapist) The waiting list is long but the therapy provided is what the patient needs at that time. We can only see patients for 'episodes of care' not ongoing. (occupational therapist) The challenges at present are around long term conditions being viewed as of equal importance to other more acute services specifically in our Trust as being specialist, if a patient falls at home and requires hospitalisation due to an injury this cost is not incurred by our Trust so there is less focus on prevention / impact of admissions etc. so we have less quality indicators to target. (physiotherapist) As therapists we are put under increasing pressure by the hospital management to discharge patients with shorter lengths of stay whilst at the same time being pressurised by relatives to keep patients in hospital longer. We're stuck in the middle of a situation neither of our making or under our control. It is making for an increasingly stressful environment to work in and more colleagues are leaving to work privately. This situation is compounded by increasing volumes of pointless paperwork and ever reducing numbers of nursing staff on the ward requiring therapists to carry out nursing basic care duties. (physiotherapist) Workload AHP workload and length of waiting lists was a huge issue for several respondents. 12 respondents commented on this and typical responses include: Our waiting lists have increased 5 fold in the past 12 months but no monies are available to increase staffing, monies need to follow the patient into community. (physiotherapist) 20

21 0.4 days for a county with over 500 MS patients results in increased waiting lists to ensure a quality service is achieved. (occupational therapist) Feel much more stretched and working under the most extreme pressures I have ever experienced since qualifying. Sometimes, I wonder if things are even clinically safe due to such high pressures. (occupational therapist) There is a developing mindset that because we haven't enough time/bodies on the ground that we are reducing our expectations of what it's potentially possible to achieve with/for a patient. I'm finding that increasingly the follow up that I need to conduct for a patient is not done in a timely manner. (physiotherapist) Frustrating - we are a very small outpatient team covering half a county for some very complex conditions. There has been no increase in hours to our service in 20 years and we do not have very dynamic Neurologists in the Trust to increase the profile of patients with long term neurological conditions... I do not feel our patients are getting the access to services they deserve There is a constant threat to downgrade Band 7 specialist posts and more needs to be done to reinforce the importance of these, in addition to specialist Band 6 posts. (physiotherapist) Funding issues: equipment and other services Seven respondents highlighted issues around funding for equipment and care packages. This seems to be a particular problem for AHPs based in the community. All but two of the responses came from occupational therapists, which may reflect their role in assessing and recommending equipment. Typical responses include: The patients we are treating with LTNC are getting far more complex to manage in the community and the difficulty getting NHS funded care to provide adequate care packages in order to support these complex patients with best management plans is getting very challenging. Not only is it difficult getting the right care in place for these people but also accessing the complex equipment they may need when they live in care homes. (occupational therapist) Demanding, frustrating, constantly trying to fight for resources which take too long to achieve and are usually too late (occupational therapist) It's extremely hard to get funding for the specialist equipment/services that we think our patients need (beyond what we can offer as standard). (occupational therapist) It s an amazing and rewarding job. However we are often constrained by waiting lists and funding issues from other services we work with e.g. orthotics, Botox etc. there are also a lack of services to refer patients onto when we've finished our input. (physiotherapist) 21

22 Training, development and banding Eight respondents highlighted issues around training, development and banding. There were surprisingly few common themes among this small number of responses. Issues raised included: The need for more training and development opportunities, particularly to develop junior staff More emphasis on neurology in pre-registration training Geographical issues in accessing training Time pressures and lack of finances impacting adversely on training Lack of training adversely impacting on ability to recruit suitable staff Lack of career progression opportunities adversely impacting already wellqualified staff 6 How can organisations support AHPs working in neurological conditions? Respondents were asked to rank options for future work to support the role of AHPs with people with long-term neurological conditions. Seven options for future work were offered, which were: Guidance on how to use outcome measures to track patient outcomes in different conditions Guide to writing a business case for a specialist AHP role Guide for commissioners/managers on best buys in specialist neurological therapies in terms of cost-effectiveness Model job descriptions and person specifications for specialist neurological AHP roles A competency framework to describe what a neurology specialist/expert AHP is A guide to translating the new MS NICE guideline into practice for AHPs A consensus/position statement by our organisations on the importance of neuro-specialist AHPs in long-term neurological conditions There was relatively even support for all seven options when all rank scorings were combined 6, with many respondents indicating in their comments that all options would be helpful. However, three options stood out as having the highest number 6 A software glitch meant that the ranking didn t work on some browsers, and 22 respondents reported that they had been unable to complete the question for this reason. A further 16 respondents skipped the question without explanation. 22

23 of number 1 or 2 rankings, as shown in figure 13. These were the guide for commissioners / managers, a consensus or position statement and guidance on outcome measures. Figure 13 Respondents' views on possible options for supporting them Common themes around the comments were: Communicating and publicising the role of specialist neurological AHPs I know we make a difference and would like the organisations to highlight the role and benefits of AHPs more. The focus seems to be more on the nursing side which although vital, cannot solve all the person s issues and needs a MDT approach so each area is contributing to the whole. (occupational therapist) I get frustrated when news media describes the NHS in terms of mainly nurse and doctors and the work of AHPs goes unsung. Need more high profile media coverage of AHP work in LTC for public, politicians and commissioners to see. Neuro charities and out AHP governing bodies need to do more of the marketing for us. Getting patients voices heard talking about the difference working with AHP has made to their life etc. Need more marketing of AHP's on national TV/newspapers, radio, Twitter, Facebook. More info on the role of AHPs and opportunities for AHPs under the new Care Act (also any threats this act brings for AHPs). (occupational therapist) I think that a position statement would be very beneficial. I need to be able to communicate my own worth succinctly in terms that non-ahp managers will understand. (occupational therapist) 23

24 We need help to defend the need for specialist therapy for people with PND, at the right time for individuals and with ease of access. (physiotherapist) I think for me the most important things that could help support our roles are a guide for commissioners (and Trust managers / Board as we cannot get to Commissioners easily in our Trust) clearly outlining the importance of the role on AHP in Neuro LTC in prevention, health promotion as well as symptom management and care as we continually have to go up against more acute neurological and Rehab (inpatient and outpatient) service for the funding. If this is also linked to a competency framework I think that would add further value. (physiotherapist) Clearer definition of the competencies defining the neuro-specialist role Most important - competency framework to define neurological specialist. (physiotherapist) The need for guidance on caseloads and skill mix The most helpful thing you could do is produce evidence of safe numbers of therapists needed per population, as this is what we are asked for and cannot supply - yet we have it for nursing. I would find it beneficial if there was some way that you could estimate the number of physios required for a particular caseload, a recommendation like the nursing staff have, which would be able to help strengthen the case for more staff. (physiotherapist) Support for more AHP research, especially demonstrating cost effectiveness Support in evidencing importance of role and what we should be doing would be helpful and also how to evidence what we are already doing. There needs to be more support for well targeted research, as the recent MS NICE Guidelines have highlighted, with more collaboration with universities. (physiotherapist) Rather than a guide for commissioners (Q5) as this doesn t apply in Scotland I think building the evidence base on cost effectiveness would be a better option for us. (physiotherapist) Overall as AHPs I feel we underuse Outcome measures and there are inherent difficulties in choosing the right one to use at the right time so I do feel further guidance on this would support AHPs in many areas such as business case development, audit, innovation as well as research. (physiotherapist) 24

25 I strongly feel that as AHPs we should be more actively involved in adding to the evidence base for the overall management of PwMS and additional support to promote AHP led research would be helpful although I do recognise the difficulties with this across different areas and institutions as well as the funding limitations but we will be continually criticised for not actively doing the research especially in view of the debate which occurred at [the MS Trust] conference around this. (physiotherapist) 7 Conclusions and next steps This survey has confirmed numerically many of the anecdotal reports that we have received, that AHPs working with people with long term neurological conditions are facing a number of threats and challenges to their roles in today s NHS. The fact that neurological specialist AHPs are, in general, working across multiple conditions (in many cases including non-neurological conditions) means that it makes sense for these issues to be publicised and tackled by a number of organisations working in collaboration with one another, rather than any single specialty organisation working alone. The organisations which represent the AHPs themselves, and those representing the interests of people with long term neurological conditions, need to work together to support AHPs so that they are better equipped to challenge these threats and make the case for the value of their roles. Organisations which could contribute are: o Professional organisations representing AHPs (e.g. TiMS, the Parkinson s UK Excellence Network, ACPIN, NANOT, the Chartered Society of Physiotherapists, the College of Occupational Therapists and the Council for Allied Health Professional Research) o Patient organisations working individually (e.g. the MS Trust, Parkinson s UK, the MND Association) o Patient organisations working collaboratively (e.g. the Support for Neurospecialists Group 7 which is facilitated by the MS Trust, the Neurological Alliance) Headings under which actions could take place might include: 1. Further work to define what is meant by neuro specialist roles, including definitions of competencies and required training. A project to define competencies has recently been launched by TiMS, the MS Trust, Parkinson s UK and the MND Association, partly in response to this report. 7 Formerly the Nurse Challenge Matrix group 25

26 2. Collating further intelligence on the size and nature of the workforce and the challenges that they are facing. 3. Producing practical guidance and support for AHPs themselves whose roles are under threat, or who want to make the case for new posts. 4. Developing the research evidence base for the value of neuro specialist roles and specific interventions with robust cost effectiveness data behind them. 5. Systematic support strategies for supporting implementation of research evidence into practice 6. CPD / training to include support for emotional wellbeing of staff working with patients who have long term conditions, plus training in ethical decisionmaking and values-based practice, risk assessment and management in complex clinical judgments 7. Producing consensus guidance on a core dataset for neuro-specialist practice (e.g. activity and caseload information) 8. Producing guidelines on clinical outcome measures which can be collected (in different patient groups and situations) to support neuro-specialist practice. 9. Producing position statements or guidance for commissioners and managers within the NHS on the value of specialist AHP roles, based on the evidence that currently exists. 10. Producing consensus guidance on sustainable workloads / caseloads for neuro specialist AHPs defining how many are needed for a given population of people with long term neurological conditions and under what assumptions 8. Our three organisations will continue to work together to take forward this agenda. 8 The MS Trust has done this type of work for MS specialist nurses. However, doing this for mixed caseloads with patients with a range of conditions would be more challenge. 26