How home care can support life with Huntington’s disease
Getting to know you and the routines that matter
When you are living with Huntington’s disease, having help that fits your way of doing things matters. You may want support getting ready in the morning, preparing meals or keeping up with friends and family. Our Home Care service offers practical assistance while respecting your choices and the things you want to continue doing yourself.
We have experience caring for people living with Huntington’s disease and supporting their families. We understand the importance of patience, familiar routines and time to communicate. We learn what works for you, whether that means explaining one step at a time, allowing longer for a reply or following a particular routine that helps you feel comfortable.
Care can begin with regular visits and develop as your needs change. We agree the help you would like, include relevant guidance from your healthcare team and keep your care plan under review. If you or your family need more support, we can also talk through respite, overnight or live-in care and explain the arrangements we can offer.
Huntington’s care at a glance
- Experience supporting people living with Huntington’s disease and their families at home
- Free, no-obligation assessment, normally in the person’s home
- Personalised care plan built around abilities, wishes, risks and routines
- A small, familiar team wherever possible
- Visits from 30 minutes, with short-term and ongoing arrangements available
- Care plans reviewed at least monthly and whenever needs change
- Rated Good by the Care Quality Commission
Understanding Huntington’s disease
A progressive condition that can affect movement, thinking, mood and communication
Huntington’s disease is an inherited condition that affects the brain. It is progressive, which means its effects develop over time, but there is no single timetable or identical experience. Some people first notice changes in concentration, planning, memory or mood; others experience involuntary movements, reduced coordination or increasing difficulty with voluntary movement.
As the condition progresses, speech, swallowing, eating, mobility and personal care can become more difficult. A person may need more time to process information or start a task, and changes in motivation or behaviour can be misunderstood by people who do not know the condition. Patient communication, predictable routines and support that works with the person rather than rushing them can make everyday care feel more respectful and manageable.
Because Huntington’s can affect people during working and family life, its impact often reaches partners, children and other relatives as well as the person with the diagnosis. Families may be balancing work, caring and complex emotions about an inherited condition. The right home support can share practical responsibilities, protect valued relationships and give family carers time to rest.
The NHS Huntington’s disease guide explains the condition, symptoms, testing and treatment in more detail. Our care works alongside medical treatment, helping agreed care, therapy and daily-living plans become consistent, reassuring routines at home.
Around 1 in 10,000 people
Estimated prevalence of Huntington’s disease in the UK. Source: NHS Genomics Education Knowledge Hub, last reviewed 9 September 2025.
Symptoms usually begin between 30 and 50
The age range in which symptoms usually begin, although they can start at any age. Source: NHS, page last reviewed 13 March 2025.
At least 8,000 people in the UK
People in the UK reported as affected, with a further 32,000 at risk. Source: Huntington’s Disease Association, published 29 February 2024.
Who Huntington’s disease care at home can support
A little help now, with room for care to develop
You can talk to us at any stage of exploring support. Perhaps you would welcome help with a few daily tasks, want to plan ahead or need someone to share the care you provide for a relative. We will listen to what is happening and help you consider where home care could make a useful difference.
People and circumstances
Care at home may help:
- someone in the earlier stages who wants discreet help while retaining work, interests and everyday routines
- a person living alone who would value regular practical support, companionship or reassurance
- a couple or family sharing care who want help with particular visits, tasks or times of day
- someone returning home after a hospital stay or responding to a recent change in mobility, eating, communication or wellbeing
- a person whose support needs have increased and may now benefit from longer visits, overnight help or live-in care
- family carers who need dependable respite without moving their loved one away from familiar surroundings
Signs that a care conversation may help
It may be worth exploring support when:
- washing, dressing, continence care or getting ready takes more effort or feels less secure
- meals or drinks are being missed, weight is a concern, or agreed swallowing guidance is harder to follow consistently
- medication, appointments or the sequence of everyday tasks has become confusing
- walking, transfers or involuntary movements are making routines more tiring or increasing the risk of falls
- speech, processing time or changes in mood make communication harder
- the person is becoming isolated or has stopped taking part in activities they value
- a partner or relative is tired, worried or no longer able to provide every part of the care
What Huntington’s disease care at home can include
Time, patience and practical help throughout the day
Our carers can help with personal routines, meals, getting around and staying connected with the people and activities you enjoy. We take time to understand how Huntington’s affects your day and how you prefer to be helped. Your care plan brings those preferences together with the professional guidance we need to follow, so your carers know what works for you.
Personal care and familiar routines
Respectful assistance can help daily routines remain comfortable and recognisable as movement, sequencing or energy levels change.
- Washing, showering, bathing, dressing and grooming
- Oral care, toileting and assessed continence routines
- Morning, evening and bedtime support
- Prompts that break a task into manageable steps
- Extra time so the person can take part without feeling hurried
Support is provided with privacy and dignity, encouraging the person to do what they can and want to do for themselves.
Meals, drinks and agreed swallowing guidance
Changes in movement, concentration, appetite or swallowing can make eating and drinking more demanding. Care may include:
- Planning and preparing preferred meals and drinks
- Providing calm, unhurried support at mealtimes
- Following texture, positioning or fluid guidance supplied by a speech and language therapist or dietitian
- Recording food and fluid intake where this forms part of the care plan
- Noticing and reporting changes such as coughing, increased difficulty or reduced intake
Practitioners follow the current professional plan and agreed escalation route rather than independently changing a prescribed diet or swallowing approach.
Mobility, transfers and the home routine
Support can be planned around involuntary movements, slower voluntary movement, stiffness, fatigue or changes in balance.
- Assistance with standing, walking and transfers where assessed
- Using prescribed mobility aids and moving-and-handling equipment
- Allowing clear space and enough time for each part of the routine
- Accompanying the person on agreed outings and appointments
- Recording falls, near misses or changes in mobility
The care plan can incorporate guidance from occupational therapists and physiotherapists, including safe ways to use equipment already assessed for the person.
Medication and health appointments
If remembering medicines or managing appointments has become difficult, we can help with the support agreed in your care plan and risk assessment. Our carers are trained and assessed for the medication tasks they carry out.
- Reminders or assistance with prescribed tablets, capsules, liquids and other agreed medicines
- Support with medicines prescribed to be taken when needed, or controlled medicines, where the required written instructions and safeguards are in place
- Clear entries in your medication administration record and secure digital care records
- Help preparing for appointments and accompaniment where arranged
- Prompt reporting of missed doses, possible side effects or other medication concerns in line with your care plan
We follow the prescribing instructions and keep an accurate record of the help provided. Your prescriber remains responsible for choosing medicines and changing doses.
Communication, thinking and emotional wellbeing
We understand that finding words, organising a task or getting started can take more time with Huntington’s. Our carers listen patiently and get to know how you prefer to communicate.
- Talking through one subject or task at a time
- Using clear prompts and giving you time to respond
- Reducing background distractions during conversations
- Following the communication methods or aids agreed in your care plan
- Keeping familiar routines and noticing when you seem worried or something has changed
Difficulty speaking does not necessarily mean difficulty understanding. We involve you in conversations and decisions, giving you the time and support you need to express yourself.
Companionship, community life and family respite
Care is also about identity, relationships and having meaningful things in the week.
- Conversation and company built around the person’s interests
- Support to continue hobbies, social contact and time outdoors where suitable
- Accompaniment to local activities, shops or appointments
- Regular sitting visits or longer respite arrangements
- Updates for relatives where the person has consented and this is appropriate
A familiar practitioner can give the person individual attention while allowing a partner or family carer genuine time away from the caring role.
Working with your Huntington’s disease care team
Bringing professional advice into everyday routines
You may already receive support from a neurologist, specialist nurse, therapists or other health professionals. With your consent, we include their relevant advice in your care plan and follow it during our visits. This can help keep the support you receive at home consistent with the guidance given at appointments.
Putting your care plan into practice
Professional advice is most useful when everyone helping you knows how to follow it. We record the instructions relevant to your home care, including support with prescribed medicines, assessed equipment, communication and eating or drinking. Your carers receive the information they need before providing that support.
As we get to know your usual routines, we can notice when something changes, such as meals taking longer, moving around becoming harder or a difference in your mood. We record concerns and contact the appropriate person as set out in your care plan, so changes can be followed up.
Keeping everyone involved up to date
We provide your agreed personal and practical care, while your healthcare professionals remain responsible for diagnosis, treatment, prescribing and therapy decisions. With your consent, we share relevant observations and keep the people involved in your support informed.
After a hospital stay, a change of equipment or new advice from your healthcare team, we review what needs to change at home. We update your care plan and explain the revised instructions to your carers before they begin providing that support.
Why choose CM Bespoke Care
A family-owned care agency in Shropshire with established local roots
We are a family-owned and managed care agency, with our head office in Cleobury Mortimer and a second office supporting clients and carers in Church Stretton. We have grown through recommendations and positive word of mouth while keeping personal relationships, honest communication and reliability at the centre of our work.
Our team combines local knowledge with structured training, secure care systems and responsive management. Across a rural county, dependable care also relies on thoughtful route planning, familiar carers wherever possible and clear communication with relatives who may live elsewhere.
Our care team and standards
Huntington’s disease care with dependable oversight
We combine more than 20 years’ experience in home care with experience supporting people living with Huntington’s disease and their families. We build each care plan around the person’s movement, communication, thinking, mood, eating, routines, family involvement and the professional guidance already in place.
- A small, consistent group of practitioners wherever possible
- Matching that considers required competencies, personality, routines, communication style and location
- Shadow shifts, observations, spot checks, supervision and task-specific competency assessment
- A dedicated care manager, secure digital records and seven-day on-call support for existing clients
- Formal care-plan reviews at least monthly and whenever needs change
- A current Good rating from the Care Quality Commission
What people say about CM Bespoke Care
Real experiences shared by clients and families
Choosing care for a progressive condition requires trust in the everyday details: practitioners arriving as agreed, listening carefully, respecting the home, noticing change and keeping the right people informed. Independent Google reviews share how clients and families have experienced care from CM Bespoke Care.
How we arrange Huntington’s disease care at home
Start with a conversation about the help you would welcome
You may have a clear idea of the support you need, or you may still be working it out. Tell us what daily life is like for you or your relative. We will answer your questions, explain how we could help and talk through arranging a free home assessment.
Tell us what is happening
Share who needs support, where care would be provided, which parts of the day have become more difficult and any important timescale. It is also helpful to mention the professionals already involved and any current communication, mobility, medication or eating and drinking guidance.
Meet us for a free home assessment
One of our experienced senior team members will usually visit you at home to learn about your routines, the help you would like and any guidance from your healthcare team. We allow time to understand how you communicate and what helps with meals, movement and personal care. You can involve someone you trust. Assessments usually take 60 to 90 minutes, with more time if needed and no obligation to proceed.
Personal care plan and care team
The agreed support is recorded in a person-centred care plan. Relevant professional guidance can be incorporated with consent. Management approves the plan, matches suitable practitioners and provides a full handover before care begins.
Care begins and stays under review
A dedicated care manager oversees continuity, communication and quality. The plan is formally reviewed at least monthly and whenever health, movement, communication, medication, routines or family circumstances change.
Ways Huntington’s support may be delivered
From regular visits to more continuous care
During the free assessment, we can help you explore the type of support that feels right now, with room for the arrangement to change over time. We welcome a conversation about the person’s needs, preferred times and location, and we will explain what we can provide in their area.
Visiting Home Care
Regular visits can provide focused help with personal routines, medication, meals, companionship or appointments while the person remains in control of the rest of their day.
Explore Home Care
Live-in Care
If you need help at several points during the day, a carer living in your home may offer greater continuity with meals, personal routines and communication. We plan their support and breaks around your assessed needs, with separate arrangements where overnight care is required.
Explore Live-in Care
Respite Care at Home
Planned respite can give a partner or family carer time to rest, work or attend to other responsibilities while familiar support continues at home.
Explore Respite Care
Palliative Care at Home
Palliative Care at Home can provide personal and practical support alongside the healthcare and hospice professionals involved, with comfort, wishes and family life kept central.
Explore Palliative CareAreas covered for Huntington’s disease care at home
Local support shaped around the person and their home
We support people and families across Shropshire and welcome enquiries from North Worcestershire and parts of Herefordshire. From the first conversation, our local team takes time to understand the person, their routines and the support that could help life at home feel safer, more comfortable and more reassuring. The links below explain more about Home Care in each part of our service area.
If you are looking for Huntington’s disease support at home—or are not yet sure what kind of care would be most helpful—please talk to our team. We can check availability at your address, listen to what matters to you and your family, and arrange a free, no-obligation assessment to explore the right way forward.
Home care in Shropshire
Home care in Herefordshire
Home care in Worcestershire
Our local team in Shropshire
Based in Cleobury Mortimer and Church Stretton
Our two offices support the carers visiting homes across Shropshire, North Worcestershire and parts of Herefordshire. They also give you and your family a local team to contact about your care, whether you want to discuss a change in routine, ask a question or arrange a review. You can see both office locations on the maps below.
Ground Floor Office Suite, Upper Baveney Park, Cleobury Mortimer, Kidderminster, DY14 8LF
Unit 1, Sandford Court, Sandford Avenue, Church Stretton, SY6 6BH
Huntington’s disease support in Shropshire
Help for you and the people close to you
Alongside help at home, you may want advice about living with Huntington’s, opportunities to meet other families or support with your own caring responsibilities. The independent services below offer different kinds of help, including specialist advice, rehabilitation, hospice support and council assessments.
Local health and medical routes
Shropshire Community Neuro Rehab Team
The Shropshire Community Neuro Rehab Team supports adults with Huntington’s disease who have a Shropshire or Telford and Wrekin GP. Its multidisciplinary work can include mobility, posture, daily activities, swallowing, communication, emotional and cognitive changes. New referrals are made by a GP, consultant or other healthcare professional.
Visit the Community Neuro Rehab Team
Severn Hospice Huntington’s support
Severn Hospice offers free, optional palliative support for people living with Huntington’s disease and their families. Its Shropshire work includes wellbeing and symptom support, advance-care conversations, family and carer support, and relaxed coffee mornings at its Shrewsbury and Telford sites. Palliative support can be introduced alongside other services and is not limited to the final days of life.
Assessments and practical support
Huntington’s Disease Association in Shropshire and the West Midlands
The Huntington’s Disease Association brings together its Shropshire and Mid Wales branch, local meetings and Specialist Huntington’s Disease Adviser contacts on one regional page. It also includes contacts for Worcestershire and Herefordshire, making it useful for families across our wider service area.
Shropshire Council Care Act assessment and direct payments
A Care Act assessment looks at day-to-day needs, goals and eligibility for council support. Eligible adults can ask about a direct payment, which may provide a way to arrange agreed care and support. This council assessment is separate from CM Bespoke Care’s free service assessment.
Read about the Care Act assessment and direct payments for adults.
Shropshire carers’ assessment
A carers’ assessment is a free conversation about how caring affects the carer’s health, work, relationships and wellbeing, and what support may help. It is separate from the assessment of the person receiving care.
Frequently asked questions about Huntington’s disease care at home
Talk to our team about Huntington’s disease care at home
Start with what is happening now
You do not need to know the right care package or have every detail ready. Tell us who needs support, the general area where care would be provided, what has changed and which parts of daily life feel most difficult. A member of the team will listen and explain the next appropriate step.
If a home assessment would help, it is free and there is no obligation to proceed. The person can involve a relative or another trusted person, and relevant professional guidance can be considered with their consent.
