Shaping the future of social care

Our Service Development Managers highlighted the value of care coordinators who “join the dots” across social care, palliative care, housing, Occupational Therapists (OTs) and wheelchair services. This approach is transformative for people with rapidly progressive or terminal conditions such as MND, where needs change quickly and delays can have serious consequences.

Examples of good practice include:

• Norfolk: Adopting the MND Charter led to an MND Professional Champions Network of 30 practitioners. This supports wide-ranging information sharing between professionals and people with lived experience with Multidisciplinary Teams (MDTs) to help address complex care needs.
• Sussex: Social care staff attend MDT meetings, ensuring everyone is aware of a person’s current situation. This enables early risk identification, timely adjustments and prevents crises. This is a cost-effective prevention measure that supports the shift toward community-based care.
• NeuroNavigators: These roles improve continuity by linking hospitals, specialist centres and social care providers so rehabilitation and equipment arrive when needed, thus preventing bottlenecks in acute care and enabling faster transition home, improving flow without significant new investment.
• National Neurology Hospital: MND Specialist Nurses help patients secure Continuing Health Care (CHC) funding by advising on when to apply and coordinating evidence from multiple specialists. Patients report reduced stress and fewer failed applications. A similar approach could support social care assessments, where people report being discouraged from applying or are assessed by staff without an understanding of MND.
   

Emerging evidence suggests that co-ordinated care improves outcomes while reducing avoidable healthcare use, offering a scalable, low-cost model for regions implementing hospital-to-community reforms (MND Together).

Norfolk’s Swift Response service is a strong model for rapid support in emergency situations, particularly for people with rapidly deteriorating conditions such as MND.

Falls are common and dangerous for people with MND. Many lose arm strength early on, meaning they cannot protect themselves when falling and cannot get back up independently. Family carers are often unable to lift an adult safely, leaving people stuck on the floor, frightened and vulnerable. 

Without a rapid-response option, the only alternative is often calling an ambulance, not because of a medical emergency, but simply because no one else can help. This is distressing for families, inappropriate for ambulance services and adds unnecessary pressure on emergency care.

Swift Response services address this gap by offering:

• 24/7 phone support
• Immediate help after falls
• A practical alternative to ambulance call-outs.

This helps prevent crises, supports people to remain safely at home and uses public resources more efficiently. Similar schemes in areas such as Shropshire have also proved effective, particularly when jointly funded with ICBs.

However, these services must be consistently available and properly supported. People affected by MND report mixed experiences: some callers have been told to dial 999 because no staff were available. This shows that while the model is strong, it must be adequately resourced and delivered by trained staff with the skills and capacity to respond safely.

Rapid-response support should not depend on postcode. With the right investment, services like Norfolk’s can protect dignity, reduce risk and relieve pressure on emergency services.

Using a Personal Health Budget (PHB) ensures most funding goes directly to carers, rather than large portions being absorbed by agency overheads. This allows carers to be paid more, improving recruitment and retention of staff with the right skills.

For example, a patient with CHC funding in northeast London was able to pay carers £13–£14 per hour instead of minimum wage, significantly improving stability in the team. This is vital for people with MND, who may experience slurred, quiet or no speech, and rely on carers who know their routines, needs and communication methods.

PHBs also allow trusted people already known to the individual to be employed as carers, increasing continuity and reducing avoidable hospital admissions or safeguarding concerns linked to unfamiliar care. A recent evaluation in Cheshire and Merseyside found that PHBs improve patient experience, provide greater choice and control, and offer value for money by enabling “relationship-based care” that prevents crises and reduces expensive reactive interventions (Community Catalysts, 2025).

Government policy reinforces this opportunity. The 10-Year Health Plan for England (2025) recommits to PHB expansion as a key measure for NHS financial sustainability, including a target to offer 1 million PHBs by 2030 and a universal offer by 2035. This reflects growing recognition that personalised, coordinated care in the community is often more cost-effective than fragmented agency-led provision.

Expanding access to PHBs and reducing bureaucracy during setup would ensure more people with MND benefit quickly from this efficient, person-centred model of care.

MND patients have complex care needs. Patients ultimately become unable to eat, breathe, speak or move independently, requiring support with complex equipment, including ventilators, suction machines, cough-assist devices, hoists, EyeGaze tablets, voice-activated software and powered wheelchairs. Among the most challenging aspects of MND care are managing secretions (preventing choking) and positioning the head and body with minimal muscle tone.  

Accordingly, MND patients need carers capable of providing such complex care. However, the inadequate pay on offer, combined with carers not being compensated for their travel time between patients, makes recruitment extremely difficult and retention even more challenging. Patients and their families have reported having to try out 20 people to find one almost-competent carer, which is exhausting and involves being manhandled painfully.

MND patients frequently report issues with the calibre of carers, both in terms of lack of training and capacity to learn quickly and effectively on the job, with many carers struggling with even basic tasks. Positioning and handling are especially problematic.

Low pay is underpinned by underfunding of the sector, with Carer’s Trust reporting that 50% of local carer services in their network have seen a reduction or no growth in their contract value since last year (ADASS, 2025). Different pay levels between local authorities or boroughs make it doubly hard to recruit in areas with lower rates.

Visa rule changes may compound workforce issues without a sound transition plan, whilst recent steps to increase pay without concomitant budget increases will result in cuts to patients’ support.

Inadequate care packages, low workforce calibre, lack of training, and poor retention are leaving unpaid carers to support the system. Many unpaid carers feel they have no choice but to care for a family member, either independently or to supplement professional care. Care packages often don’t provide enough hours, with limited visits during the day, often not when someone needs to use the bathroom. When paid carers don’t arrive, are late, or are incompetent, family members have to step in to fill the gaps. Unpaid carers have told us that coordinating care is like a full-time job, and they are frequently left to train a revolving door of paid carers, despite the overheads that agencies charge.

These pressures cause many unpaid carers to give up work and see their health severely affected. 66% of MND carers we surveyed in 2022 reported feeling exhausted mentally and 64% physically, with 75% experiencing high stress levels (MND Association 2022). Ninety-four per cent of MND carers believe that the current Carer’s Allowance is inadequate, further pushing unpaid carers into poverty. Our report also found that 47% of MND unpaid carers are worried about money, 49% say caring has caused financial hardship, and 22% report being in debt or having gone into debt to cover costs related to MND:

“Had to give up work to care for husband with MND. Feel very isolated and worried about the future. Everyone we come into contact with…ask what help we get, but there is none out there.”  

Furthermore, access to respite is limited and often inflexible, leaving carers without a genuine break. Even when respite is available, it may not include staff with the skills or confidence to support someone with MND, meaning carers cannot fully switch off and may worry about the safety and wellbeing of the person they care for. Sustainable, skilled respite provision is essential to prevent burnout and enable families to continue caring at home.

Lengthy delays in decisions and appeals for Continuing Healthcare (CHC), social care and Disabled Facilities Grants (DFGs) mean many people with MND die before receiving essential support, spending their final months fighting bureaucracy instead of living well. One patient reported waiting over a year for an Integrated Care Board (ICB) to respond to an appeal against cuts to their CHC package, with no clear point of contact and serious safety concerns ignored. The average time from DFG application to completion of major adaptations is 289 days in Wales, 357 in Northern Ireland and 375 in England (MND Association, 2025). Such delays are devastating when a third of people with MND die within a year of diagnosis. Similarly, one patient told us it took almost a year to set up their Personal Health Budget.

Patients report postcode lotteries in both CHC and DFG provision. A Nuffield Trust study found falling numbers of people eligible for CHC, with significant variation across England, concluding that “urgent action is required to improve consistency and fairness in how CHC currently operates” (Nuffield Trust, 2025). Differences include whether equipment such as ceiling track hoists is means-tested.

Additional pressures heighten inequalities and distress: hospice beds are closing, inpatient criteria are tightening, and some speech and language therapy teams are being told to close MND cases. Local authority budget constraints limit social care, and reliance on temporary social workers reduces continuity. Overall, the system is under severe strain, causing avoidable delays, inconsistency and harm.

MND patients with CHC funding are subjected to annual reviews of their eligibility, despite MND being a progressive, terminal condition with no chance of improvement. For example, one MND patient who is on long-term, permanent 24/7 invasive ventilation via tracheostomy, tube fed and paralysed is still subject to annual ‘eligibility’ assessments. When the ICB removed part of this patient’s CHC funding, the reviewing nurse had no influence in the process, with decision-making carried out behind closed doors and the ICB panel uncontactable. 

A recent AgeUK report on CHC also highlighted an “opaque system,” meaning that patients and families waste valuable time trying to engage with decisions made “behind closed doors.” (AgeUK report and article, 2024).

Patients’ experiences indicate that the care system is focused on endless, exhausting, box-ticking visits and assessments by CHC nurses, agency managers, OTs, SLTs, environmental control, dieticians, palliative care, and others, on their terms. However, when patients need urgent help, accessing timely support is often difficult. 

Multiple unpaid carers for MND patients have reported that when their relative is admitted to hospital, ICBs have paused CHC packages (MND Association, 2025). CHC carers are still required to support MND patients with communication and manual handling. It is unreasonable to expect nurses to complete these tasks given MND patients’ limited muscle tone and speech: two FTEs cannot simply merge into one. As a result, MND patients suffer in hospital and lose their staff, while NHS staff face increased pressure.

For people with MND, a system defined by underfunding and excessive bureaucracy wastes time and causes avoidable harm. Lengthy decision-making processes for CHC and Personal Health Budgets can take months, during which time needs escalate and avoidable deterioration occurs, leading to costly crisis interventions which earlier action could have prevented. When 1/3 people with MND die within a year of diagnosis, there is no time to wait.

Families describe constant referral between departments, no clear point of contact and serious safety concerns being ignored. This creates barriers to the hospital-to-community shift and leaves unpaid carers to fill the gaps. The low rate and age restrictions on Carer’s Allowance, combined with the impossibility of working while providing full-time care, push many carers into poverty and worsen their health (MND Association, 2022). This increases long-term reliance on welfare and healthcare services, rather than supporting early, preventative care that maintains stability at home.

Disabled Facilities Grants that should support safe, independent living also fail people with MND because of means testing and long waits. The average time for major adaptations to be installed in England is 375 days (MND Association, 2025). These delays lead to more falls, hospital admissions and avoidable use of NHS resources.

Processes remain paper-heavy and fragmented rather than supporting the analogue-to-digital shift. In some areas, IT systems between specialist centres, hospitals and community teams do not connect. Clinicians sometimes rely on physical letters hand-delivered by patients to share vital information, increasing risks and delaying practical support for rapidly changing needs.

A major source of wasted resources in adult social care is the continual cycle of recruiting, training, and then losing care staff who lack the skills or support to meet the complex needs of people with MND. Training new carers who struggle to learn safe moving and handling techniques is inefficient and often dangerous and distressing for patients and their families. Suitable carers also leave quickly due to low pay and poor conditions, so the same training effort must be repeated again and again.

This is compounded by a widespread lack of knowledge about MND in social care and the wider NHS, unless staff are specialists. Families are left acting as both trainers and advocates. One unpaid carer told us, “It has been exhausting trying out new people, painstakingly explaining every detail of how to look after my husband (…) Training them took hours of my time, but did not save me any time, as I was still doing most of his care.”

When patients are admitted to hospital, carers are often not allowed to provide essential personal care. For those who cannot speak or advocate for themselves, this means needs can go unmet and safety compromised. These gaps reflect poor coordination between community care and specialist teams. Better linking social care with MND specialists, for example, through NHS neighbourhood multidisciplinary approaches, would help improve skills and prevent avoidable harm.

Differences in pay across local areas worsen recruitment problems and keep the system trapped in an exhausting and inefficient cycle.