Support Groups

Huntington’s Disease Association (H.D.A.)

The Condition

  • HD is a progressive, hereditary neurological disorder which used to be known as Huntington's Chorea.
  • Symptoms are wide ranging and usually begin in middle adulthood, but can occur at any age.
  • HD is caused by a faulty gene on chromosome 4, which leads to damage of nerve cells in specific areas of the brain.
  • Each person whose parent had HD is born with a 50:50 chance of inheriting the faulty gene. Anyone who inherits the faulty gene will, at some stage, develop the Disease.
  • The course of the Disease is unpredictable and involves a triad of movement, thinking, and emotional symptoms, which vary even within the same family.
  • Early symptoms might include involuntary movements, clumsiness, lack of concentration, short term memory lapses, depression, mood change, irritability and aggressive outbursts.
  • Symptoms gradually deteriorate over approximately 10-20 years. In the later stages there tends to be a more global dementia, a continuation of psychological symptoms, an inability to communicate verbally, impaired swallowing, complete physical dependence.
  • There is no known cure for HD and effective treatment of symptoms remains in the experimental stage.

Incidence & Prevalence

  • 1 in 10,000 of the population are symptomatic at any one time in the UK.
  • 3 times this number are pre-symptomatic.
  • Many more than this are living with being at risk, but have not been tested.

The impact on health and social care services

In addition to the 'core' team, people living with HD may require support from:

  • Genetic Services
  • Mental Health Services
  • Domiciliary and Palliative care services
  • Respite services
  • Specialist equipment is likely to be required (e.g. specialized beds, chairs and wheelchairs, communication aids).

The Huntington's Disease Association

The organisation exists to support people affected by Huntington's disease. It has a central information service, a regional care advisory service, local branches and groups throughout the country and a research programme. It offers a helpline service, a twice-yearly newsletter, publications and information, a welfare and respite care grant fund. Details of all services can be found on the website www.hda.org.uk or by phoning their head office on 0151 331 5444.

How PJ Care can help

We have long experience of dealing with residents with Huntington's Disease and our staff have been trained to understand the illness and its symptoms. We develop individual Care Pathways for each resident, designed to help them maintain independence and quality of life, in close consultation with families and carers.

Our high-quality accommodation offers a unique purpose-designed environment, with spacious and comfortable rooms, and enclosed gardens/courtyards. A multi-disciplinary care team delivers indoor and outdoor therapies and a varied programme of activities, exploring and encouraging each resident's interests and abilities.

If you want to discuss a family member or loved one who is suffering from Huntington's Disease, or would like some advice, our clinical advisors would be more than happy to talk to you. 

Call us on 01908 648 198 or email enquiries@pjcare.co.uk

Motor Neurone Disease Association (MNDA)

Our mission is to fund and promote research to bring about an end to MND. Until then we will do all that we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible, and die with dignity. We will also do all that we can to support the families and carers of people with MND.

Condition

  • Motor Neurone Disease (MND) is a rapidly progressive, fatal disease that can affect any adult at any time. The cause of MND is unknown and there is no known cure
  • The degenerative neurological condition causes motor neurones in the brain and spinal cord to break down, leaving people unable to walk, talk or swallow, and yet the brain and senses usually remain unaffected so people with MND can still think and feel. Their muscles simply refuse to work
  • The effects of MND can vary enormously from person to person, from the presenting symptoms, the rate and pattern of the disease progression to the length of survival time after diagnosis

Incidence and Prevalence

  • It is a comparatively ‘rare’ disease
  • 2/3:100,000 are diagnosed with MND each year in the UK
  • At any one time there are approximately 5000 living with MND in the UK
  • This translates to 7:100,000 of the population

The Impact on health and social care services

  • Motor Neurone Disease can be extremely difficult to diagnose for several reasons and general practitioners come across one or two cases in their career
  • Motor Neurone Disease is a disease of low prevalence but highly complex and many different health and social care professionals may need to be involved including:
  • Neurologist
  • Specialist/District/Community nurse
  • Speech and Language Therapist
  • Dietician
  • Occupational Therapist
  • Physiotherapist
  • Respiratory specialist
  • Social worker
  • Psychologist
  • Welfare Rights adviser
  • Palliative care team

The Motor Neurone Disease Association

The Motor Neurone Disease Association is the only organisation which supports people affected by MND in England, Wales and Northern Ireland.

For more information please contact MND Connect on 08457 626262 or visit our website www.mndassociation.org. The Regional Care Development Adviser for Northamptonshire is Rachel Boothman – phone 01536 710190 or email rachel.boothman@mndassociation.org

How PJ Care can help

We have long experience of dealing with residents with Motor Neurone Disease and we develop individual Care Pathways for each resident, designed to help them regain/maintain independence and quality of life, in close consultation with families and carers.

Our high-quality accommodation offers a unique purpose-designed environment, with spacious and comfortable rooms, and enclosed gardens/courtyards.  A multi-disciplinary care team delivers indoor and outdoor rehabilitation therapies and a varied programme of activities, exploring and encouraging each resident’s interests and abilities.

If you want to discuss a family member or loved one who has Motor Neurone Disease, or would like some advice, our clinical advisors would be more than happy to talk to you. 

Call us on 01908 649 198 or email enquiries@pjcare.co.uk

Frontotemporal Dementia Support Group (FTDSG) [formerly Pick’s Disease Support Group]

Their mission statement is:

  • To decrease the sense of isolation felt by carers
  • To facilitate a sharing of problems, feelings and ideas
  • To give both those with the disease and their carers up to date information on the rarer dementias.

Having dementia brings problems enough for both those with the disease and their carers. When it affects younger people and when the form of dementia is rare then the problems that have to be faced are even more complex.

Getting a correct diagnosis may be difficult. Few facilities are appropriate to this group’s specific need. Carers find it hard to plan for the future and may feel very isolated.
That is why the Frontotemporal Disease Support Group (FTDSG) was formed:

  • To decrease the sense of isolation felt by carers
  • To facilitate a sharing of problems, feelings and ideas
  • To give both those with the disease and their carers up to date information on the rarer dementias.

The Condition

Frontotemporal dementia (FTD) is a group of conditions caused by loss of cells mainly in the frontal and temporal lobes of the brain. The main symptoms are a progressive change in personality and behaviour or progressive deterioration in language abilities.

It can affect both men and women and usually starts in the 40’s, 50’s or 60’s. However it can also affect older people, and rarely, even younger people.

It was originally described by Arnold Pick in 1892 after whom it was named. Most doctors now prefer to reserve the name ‘Pick’s disease’ for just one of the types of changes in the brain tissue that may be seen with the disease. 

FTD is classically subdivided into two types:
Behavioural variant FTD (bvFTD)
Primary progressive aphasia (PPA), which includes progressive nonfluent aphasia (PNFA), semantic dementia (SD) and logopenic aphasia (LPA)

What causes FTD?
FTD is caused by loss of brain cells in the frontal and temporal lobes of the brain. However, the processes that lead to the loss of these brain cells are not well understood. There are a number of different underlying pathological changes that are recognised and several different pathological varieties of FTD. It is known that there is an abnormal accumulation in the brain cells of certain proteins (these include the proteins known as ‘TDP-43’, ‘Ubiquitin’, ‘FUS’ and ‘Tau’) but we do not yet fully understand why this accumulation occurs, or how it leads to the loss of cells.

In somewhere between 30 and 50% of cases a person with the disease may have a family history of the disease in one of their parents, brothers or sisters. In these cases the cause is more likely to be genetic. Problems in the tau (or MAPT) gene, progranulin (or GRN) gene or a gene called C9ORF72 are the cause in some of these cases, but not all abnormal genes have been discovered yet. Genetic testing is available in some centres. Other genes known as VCP, TARDP (or TDP-43), FUS and CHMP2B are extremely rare causes of FTD. Testing for these is not generally clinically available.

Links to other diseases
In a small number of patients FTD can overlap with one of a number of diseases that affect movement of the body: motor neurone disease (MND, sometimes called amyotrophic lateral sclerosis, ALS), progressive supranuclear palsy (PSP) or corticobasal degeneration (CBD). Symptoms of MND can include weakness of the limbs or problems with swallowing. PSP causes problems with movements of the eyes as well as problems with thinking and behaviour. There are often other physical problems such as falls, difficulty walking and stiffness.Even when the diagnosis is not clearly MND, PSP or CBD, some patients with FTD will later develop symptoms similar to Parkinson’s disease such as slowing of movements, tremor and stiffness of the limbs.

Prevalence

There are approximately 17,000 people suffering from dementia with onset before the age of 65.  About 40% of these suffer from FTLD

The impact on health and social care services

Any person living with this disease will need to have call on many and varied members of the health and social care professions including:

  • Neurology - Consultant Neurologist or Psychiatrist
  • Social Worker
  • Specialist nurse
  • Occupational therapist
  • Physiotherapist
  • Speech and Language therapist
  • Dietician
  • Palliative Care services
  • Paid carers – for direct care or respite
  • Social service provision of mobility equipment and home-safety equipment

The Frontotemporal Dementia Support Group

 The main aims of the FTDSG are to provide information about the disease and to support carers.
The group meets several times a year at venues around the United Kingdom and has an annual seminar open to professionals and carers.


An important way of providing information is via a regular quarterly newsletter written by carers and professionals. This can be mailed in hard copy or is available on the internet. See the web site for up to date details.

Website: http://www.ftdsg.org

 

How PJ Care can help

We have extensive experience of dealing with residents with Frontotemporal dementia and our staff have been trained to understand the illness and its symptoms.  We develop individual Care Pathways for each resident, designed to help them maintain independence and quality of life, in close consultation with families and carers.

Our high-quality accommodation offers a unique purpose-designed environment, with spacious and comfortable rooms, and enclosed gardens/courtyards. A multi-disciplinary care team delivers indoor and outdoor therapies and a varied programme of activities, exploring and encouraging each resident’s interests and abilities.

If you want to discuss a family member or loved one who is suffering from Pick’s Disease, or would like some advice, our clinical advisors would be more than happy to talk to you. 

Call us on 01908 648 198 or email enquiries@pjcare.co.uk

Progressive Supranuclear Palsey (PSP)

The Condition

  • PSP is a progressive neurological and inevitably fatal disease
  • There is currently no known cure or viable medication
  • It generally affects people over the age of 60 but can also affect people in their 40s and 50s.
  • Lifespan after onset of symptoms is approximately 5-7 years but early diagnosis is rare and many patients die within 2-3 years after correct diagnosis
  • Symptoms are varied and in early stages tend to generate falls (often backwards) progressing to difficulties with speech and swallowing, vision, continence and mobility whilst the intellect generally remains intact.

Prevalence

According to recent research the prevalence is thought to be 6.4 per 100,000 which makes it at least as common as Motor Neurone Disease.  Leading neurologists believe this number to be seriously understated as many are mis-diagnosed or undiagnosed.

Any person living with this disease – whether diagnosed or not – will need to have call on many and varied members of the health and social care professions including:

  • Neurology consultant
  • Specialist nurse
  • Occupational therapist
  • Physiotherapist
  • Speech and Language therapist
  • Dietician
  • Palliative Care services
  • Paid carers – for direct care or respite
  • Social service provision of mobility equipment and home-safety equipment

The PSP Association

This is an advocacy organisation promoting research worldwide into PSP and providing information and support to affected families.  Local support groups are organized wherever there are enough patients.  There are currently 24 such groups across the UK – with more in the process of being organised.

The PSP Association is a small charity but has recently funded 5 Regional Development Officers across the country are committed to raising awareness of this disease among the health and social care professions to facilitate earlier diagnosis and relevant treatment of the condition.

Website: www.pspeur.org  Email: psp@pspeur.org

How PJ Care can help

We have extensive experience of dealing with residents with PSP and our staff have been trained to understand the illness and its symptoms.  We develop individual Care Pathways for each resident, designed to help them maintain independence and quality of life, in close consultation with families and carers.

Our high-quality accommodation offers a unique purpose-designed environment, with spacious and comfortable rooms, and enclosed gardens/courtyards. A multi-disciplinary care team delivers indoor and outdoor therapies and a varied programme of activities, exploring and encouraging each resident’s interests and abilities. 

If you want to discuss a family member or loved one who is suffering from PSP, or would like some advice, our clinical advisors would be more than happy to talk to you. 

Call us on 01908 648 198 or email enquiries@pjcare.co.uk

Spinal Injuries Association (SIA)

The Condition

  • Spinal cord injury is one of the foremost causes of disability in young people and is often caused by road traffic accidents, sporting injuries, assaults or falls.
  • The effects of the injuries are usually for life, therefore the number of people living with spinal cord injury rise year on year.
  • The effects of spinal cord injury are often devastating and include paralysis. In addition, they encounter associated ageing problems with shoulders, skin, bladder and bowels, and nutrition, while having no impact on life expectancy.   For many, it is the family who will become the main carers.

The impact on health and social care services

Over the course of their lives, people with a spinal cord injury are likely to require input not only from the core team of health and social care professionals but also from:

  • Physiotherapists
  • Social workers
  • Carers/nurses

The Organisation – Spinal Injuries Association (SIA)

The Spinal Injuries Association (SIA) is the leading national charity for spinal cord injured people. It is unique in that it is a user led organisation; elected Trustees are all spinal cord injured and are voted for by the spinal cord injured membership.

SIA aims are to:

  • Offer support and assistance from the time of injury and for the rest of a paralysed person's life
  • Provide services to increase an individual's quality of life
  • Support the families of newly injured people
  • Increase knowledge and awareness of the causes and consequences of spinal cord injury
  • Campaign for the best medical and social care for spinal cord injured people


Contact SIA:

Web:  www.spinal.co.uk  Email:  sia@spinal.co.uk

Tel:  0845 678 6633  Freephone advice line:  0800 980 0501 

Text:  Text 'SIA' followed by your message to 81025

Post: SIA House, 2 Trueman Place, Oldbrook, Milton Keynes MK6 2HH

How PJ Care can help

We have long experience of dealing with residents with spinal cord injuries and we develop individual Care Pathways for each resident, designed to help them regain/maintain independence and quality of life, in close consultation with families and carers.

Our high-quality accommodation offers a unique purpose-designed environment, with spacious and comfortable rooms, and enclosed gardens/courtyards.  A multi-disciplinary care team delivers indoor and outdoor rehabilitation therapies and a varied programme of activities, exploring and encouraging each resident’s interests and abilities.

If you want to discuss a family member or loved one who has a high spinal injury, or would like some advice, our clinical advisors would be more than happy to talk to you. 

Call us on 01908 634992 or email pjcare@pjcare.co.uk

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