Key Findings

The User and Carer Experience

Diagnosis and care management

In general the overview studies indicate that although getting a diagnosis may take longer than for many medical conditions some aspects of condition management appear satisfactory. Fitzpatrick et al (2010), for example, found that two thirds (66%) of respondents in their service user survey who were able to provide an estimate, waited less than six months between consulting a GP and seeing a hospital specialist and 34% appeared to wait six months or longer. Overall, around two-thirds (65%) received a definite diagnosis within a year. Hoppitt et al (2011) indicate that obtaining a diagnosis can be much lengthier in the case of rarer neurological conditions, as more prevalent conditions need to be eliminated first. The mean time to diagnosis for Multiple Systems Atrophy, for example, was three years, compared with six months for Huntington's Disease.

Fitzpatrick et al (2010) also indicate that the majority of the service users in their study did not feel they got enough information at the time of diagnosis. In particular, only just over one quarter (27%) felt they received enough information about possible medication side effects. Nevertheless, both Fitzpatrick et al and Jackson et al (2011a) report that a majority of their respondents were (or had recently been) in contact with a health professional about their neurological condition.
Overview and spotlight studies alike indicate that specialised neurological services, where available, were well regarded by those who use them (Fitzpatrick et al, 2010; Hoppitt et al, 2011; Abbott and Carpenter, 2009; Cook and Atkin, 2011). Bernard et al (2010) identify specialist expertise as a common feature of those services that were rated highly by service users, with ongoing support from nurse specialists being particularly valued. Nearly all the participants in Hoppitt et al’s study (2011) reported that they had used a specialist rehabilitation service in the previous 12 months.

The experience of generalist services was mixed. Fitzpatrick et al report that under half (46%) of participants felt their neurological needs had been met when in hospital for an unrelated problem. When admission was related to the neurological condition 40% considered that their needs had been met. Hoppitt et al’s findings (2011) indicate over two-thirds (69%) of their sample felt that hospital staff met the specific needs of their condition either ‘quite’ or ‘very' well. Their evidence indicated that some conditions, such as Charcot Marie Tooth disease (CMT), may be less well-understood. Jackson et al (2011a) found carers lacked confidence in generic advice services, when they were caring for someone with a rare neurological condition.

Satisfaction was generally low in respect of the co-ordination of services. Both Jackson et al (2011a) and Fitzpatrick et al's overview studies (2010) found that only around a quarter of service users or carers felt that health and social services were working well together in providing care. Both studies also reported that only around a third of respondents felt there was a single professional co-ordinating their care, a finding supported by Abbott and Carpenter (2009) and Hoppitt et al (2011). Hoppitt et al found, however, that a named care coordinator was more frequently provided to people with the more severe, life-limiting conditions.

Support for daily living

Families in Abbott and Carpenter’s study (2009) reported that assessments for daily living support, via children’s or adult social services, were intermittent, with those that were undertaken not always followed through. Hoppitt et al indicate that under one third of those living with rarer conditions received an assessment, although mobility assessments were more frequent for some conditions such as Progressive Supra-nuclear Palsy (PSP).

Fitzpatrick et al's overview study (2010) found, uniquely, that the majority of service users surveyed were not offered help with personal care or housework from social services, or they received it from other sources. Their study showed that this presented problems for 11% (n=272) of the sample in respect of housework and 3.9% (n=95) for personal care.  More generally, they found that four in ten participants felt that social services staff understood their needs and that six in ten felt that hospital consultants did so.

Overview studies indicate fairly extensive use of equipment and home adaptations. Hoppitt et al, for example, found that seven out of ten of those living with rarer conditions had a home adaptation and over three-quarters (78%) had received equipment. Many fewer (29%) had received Telecare equipment. Abbott and Carpenter's in-depth study found the majority had sufficient equipment or had no difficulty in securing additional equipment needed. However adaptations were more difficult to arrange. Under half (49%) had had homes adapted and over one in ten (12%) had not been able to secure the finance needed to do so.

Occupational therapists (OTs) were generally seen to play a key role in obtaining the right equipment and home adaptations for carers and families in Jackson et al’s (2011a) overview survey of carers. Abbott and Carpenter’s (2009) more in-depth study however found the families' experiences were variable, with the majority finding OTs supportive but a small minority perceiving them as obstructing, rather than facilitating provision.

Overall, both overview and spotlight studies indicate general satisfaction with the provision of equipment (Fitzpatrick et al, 2010) and adapted accommodation, once provided (Abbott and Carpenter, 2009). However, excessive waiting times were reported in some areas for building adaptations and equipment (particularly wheelchairs) and also for appropriate accommodation (Bernard et al, 2010; Abbott and Carpenter, 2009).

Choice and control

The overview studies provide a similarly mixed picture in respect of the extent to which research participants and their carers considered that they had choice and control over the provision of services. Fitzpatrick et al (2010) found that four out of ten felt they were involved as much as they would like in their care, or that their preferences had been taken into account in the planning of their care. Only just over two out of ten (22%) were aware of having a personalised care plan.

Under one third (27%) considered they had been given enough support by care professionals to develop effective self-management strategies. The lack of timely information to underpin choice and control was noted by both Abbott and Carpenter (2009) and Hoppitt et al (2011). Overall, the experience of person-centred care was evident across the studies although it was revealed as somewhat uneven with very few professionals identified as taking an identified care-coordinating role (Abbott and Carpenter, 2009).

Direct Payments are considered central to increased choice and control (DH, 2007) and the LTNC RI evidence suggests that, when they worked, they were seen to enhance control over timing and provider, and to increase the flexibility of care provision. Pooled data from Jackson et al’s two studies however found less than a quarter (23%) of study participants and very few (7%) of their carers had received these payments. Those who had, used them to access a wide range of services, both for the adult they cared for and themselves (2011b).

Overview (Jackson et al, 2011a) and in-depth (Abbott and Carpenter, 2009) studies indicate that many found the process of using Direct Payments complex and time-consuming. Around a third of the families in Abbott and Carpenter's study reported using a Direct Payment and none of the young men had used them in their own right. In part this was due to lack of choice, or poor information about the available service options; in part it was due to the payments being seen to involve additional responsibilities and effort.

Economic and social inclusion

Overview and spotlight studies alike found that services offering opportunities for social and economic engagement, such as peer support, social and leisure activities and skill development were valued by many service users, and were seen to be an important element in community rehabilitation (Bernard et al, 2010; Jackson et al, 2011b; Dawes, 2012; Cook and Atkin, 2011).

Many of the people with LTNCs who participated in the research however reported that their opportunities for work and social contact were restricted by lack of information, inaccessible facilities, attitudinal barriers and/or limited practical support (Abbott and Carpenter, 2009; Dawes, 2012; Jackson et al, 2011b). Good information about available support was seen to be crucial. Abbott and Carpenter for example found that, while most parents felt they had enough information about their son’s Duchenne Muscular Dystrophy (DMD), two thirds did not know enough about the services available or future options (2009). Dawes (2011) found that people with neurological conditions were inhibited from using community-based exercise facilities, such as leisure centres, by the lack of information about safe, effective exercise on the part of fitness staff and health professionals.

Support for entering or continuing in paid employment was seen to be particularly limited. Under a quarter (23%) of Fitzpatrick et al's respondents (2010) had been in paid employment in the previous three years. Just two in ten of these had received support to stay in, or restart, work, although only a minority expressed a need for this type of support. Abbott and Carpenter's in-depth study of young men with DMD found that only one quarter had ever worked and, of those who had tried, only two out of ten had received any support to help them stay in work. Even fewer had received therapy or guidance to help them to secure paid employment. Once they had completed their education, daily life for the majority of these young men was typically one of social isolation and largely unfulfilled potential (Abbott and Carpenter, 2010).

Support for carers

Both overview and spotlight studies reveal the considerable volume of care being provided by informal carers. In Jackson et al’s 2011b in-depth study, nine in every ten participants with LTNCs were rated by their carers as having complex needs. Their wider survey (2011a) found that three-quarters of those being cared for needed 'significant help' due to physical impairments, hidden impairments, such as behavioural difficulties, or both. On average, caring activities were reported to take up 11.6 hours per day - over 80 hours a week. Even for those towards the end of their lives, with a symptom burden comparable to those with late stage cancer, Leigh et al (2011) indicate that the great bulk of care is provided by informal carers or relatives.

Despite this, around a third of carers (34%) in Fitzpatrick et al's (2010) study felt their caring role was not recognised or valued by GPsJackson et al (2011a) found evidence of a general lack of involvement of carers in planning. Over three quarters of the 282 carers in this study said they needed more help with planning treatment and care for the adults they looked after than they were receiving.

The research indicates that when carers are separately assessed they are significantly more likely to receive the services they need (Jackson, 2011b). However, many carers are still not being identified as having support needs in their own right. Pooled data across Jackson et al's two studies, however, reveal that under half (46%) of participants had been offered a separate assessment and this was true of just over two out of ten (21%) in Fitzpatrick et al's (2010) study. On balance, carers of adults with hidden impairments, such as behavioural or cognitive difficulties, were less likely to have been offered an assessment than those caring for people with more obvious physical impairments (Jackson, 2010b).

Both studies by Jackson et al identified a general confusion on the part of carers about eligibility and a perception that health and social care practitioners were reluctant to undertake a separate assessment of their care needs. Not all carers wanted an assessment, however. Fitzpatrick et al found that only just under a quarter (23%) of those who had not been assessed would like to have been.

Of those who were assessed, Jackson et al's overview study (2011a) found that only half were recommended services and two thirds ultimately received them. Their spotlight study (2011b) found under two out of ten (18%) received any services following assessment. Fitzpatrick et al report that only one third of those given a carer assessment found it helpful and that under half (45%) received a written plan as a result. Over three quarters of the full sample indicated they needed more help with planning treatment or care, either currently or in the future. Just under a quarter (23%) felt they needed training in caring tasks, for example, but none had been provided.

Respite and replacement care were the most common service offered to carers following an assessment. Jackson et al. (2011a) found that for two-thirds of those who had a care plan as a result of a separate assessment, this addressed the need for respite or replacement care. One third of carers in Jackson et al's in-depth study (2011b) judged they would have been housebound, or would have to have been accompanied by the person they cared for when they went out, had replacement care not been available. Just one in ten carers in Fitzpatrick et al's national survey had received respite care, with the same proportion indicating they had not received it when they needed it.

There were concerns however about the competence of replacement care staff, particularly in respect of having the skills to support adults with complex problems appropriately, including those with psycho-social needs.  Jackson et al indicate that, if these concerns could be assuaged, the proportion of carers willing to use these services would rise from over half (51%) to over nine out of ten (91%). Just under half (45%) indicated they would use these services in order to work, the majority (84%) to take a short break for rest/relaxation and over half (59%) to take a longer break.

Carers also confirmed the importance of having the right equipment (Jackson, 2011a; Fitzpatrick et al 2010), but under half (46%) of those they surveyed felt they had been provided with the equipment needed to help with their caring tasks. The overview studies indicate limitations in other forms of essential support for carers, such as information about available services (Hoppitt et al, 2011; Fitzpatrick et al, 2010). Over half (56%) of the carers in Fitzpatrick et al's study and three-quarters in Jackson et al's (2011a) survey reported that they needed more advice and information about the neurological condition, key health and care professionals and/or available support.

Overall, contact with health services was good. The majority of carers in Jackson et al's (2011b) overview study had contact with their GP (73%) or specialist (81%) in the year before the study, over half (52%) with a therapist of one kind or another and/or with a practice nurse and a similar number with a social worker/care assessor. Almost three quarters (72%) considered these professionals to be their named contact. However, there was general uncertainty about who was performing the ‘care co-ordinating’ role. Only a third had an identified case manager or equivalent, responsible for the planning and co-ordination of care.

Overall there was evidence of satisfaction with services across the studies, albeit more consistently with health than with social care (Bernard et al, 2010; Fitzpatrick et al, 2010; Jackson et al, 20011a). It was clear that levels of satisfaction were greater for some groups of service users/carers and certain conditions than others (Bernard et al, 2010; Abbott and Carpenter, 2009). Despite an apparent lack of awareness on the part of commissioners about the needs of specific minority ethnic communities, the majority of users and carers from those minority ethnic communities who participated in the research studies (Hoppitt et al, 2011; Jackson et al, 2011b) considered the care services they received to be fair, equal and culturally appropriate.

Services to support key transition points, such as into adulthood (Abbott and Carpenter, 2010) and towards the end of life (Leigh et al, 2011) could be particularly difficult to obtain. Abbott and Carpenter found unmet need for timely and appropriate information on the transition from childhood to adult services for young men with DMD. Leigh et al found that only just over half (55%) of those at the end of life and severely affected by Parkinsonian disorders had contact with a PD nurse, and just over one third (38%) with any kind of therapist, in the previous three months. Over the same period, just over one third (34%) had contact from a home care worker and one quarter from a social worker. Few had access to specialist palliative care services or to timely psychological support before or after bereavement (Jackson, 2011b).


Actual numbers however were quite small: 20% of the main sample (n =500 ) had been in hospital in the previous year for a problem unrelated to their neurological condition and 15% (n =383 ) specifically for the neurological condition (Fitzpatrick, 2011:71).


Equipment refers to products to help with daily living activities, such as bathing or using the toilet, mobility items for the home, special beds or chairs. Telecare refers to a range of electronic aids that can alert carers or a Call Centre if a person is at risk and needs assistance but is not in a position to summon help themselves. Telecare can be set up in different ways, e.g. by monitoring activity which is linked to alarm call systems.



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