unit 3: care for people with mnd

MND ELEARNING UNIT 3: CARE FOR PEOPLE WITH MND

Pilgrim Projects Limited 2010 – 3.1 –

Unit 3: Care for people with MND While the early signs and symptoms of MND can differ widely due to the different forms of

onset and individual variations, being a progressive disease, most of the symptoms of the

different forms begin to overlap with time. It is, therefore, possible to talk about the common

effects of MND symptoms. This unit deals with these common effects, the problems they

cause for daily living and some of the practical means for alleviating them or adapting to them.

There are strategies, in conjunction with assistive devices, treatments and therapies, that can

promote well-being and can help the person with MND maintain an active and independent

life for as long as possible. In addition, carers also face their own specific problems that need

to be addressed.

Care for a person with MND should be co-ordinated between the relevant teams, including the

main carer, the primary care team and MND specialists, centred around the patient’s own

needs and wishes. More information about the professionals involved, their specialist areas

and support will be given in Unit 7.

Objectives On completion of this unit, you should be able to:

• describe the common effects of the symptoms of MND

• suggest different ways in which these effects can be alleviated

• describe the specific problems encountered by carers

• list the symptoms associated with poor respiratory exchange.

Section 3.1: Common effects and initial solutions Common effects of the symptoms of MND

Although not all people with MND will develop all the symptoms, most will eventually suffer

many of the most common symptoms; patients may also experience symptoms with causes

other than MND, which should be investigated.

The most common effects of the symptoms of MND that affect daily life are:

• Difficulties with eating – cutting up food, holding eating and drinking utensils,

swallowing and chewing (choking and drooling)



• Difficulties with mobility – walking (tripping and falling)

• Muscle and joint pain

• Difficulties with posture

• Difficulties with gripping and holding – writing, using keys, opening doors

• Difficulties with speaking

• Breathing difficulties

• Swallowing difficulties resulting in choking

• Excessive saliva (due to an inability to be able to swallow effectively)

• Difficulties in coughing productively

• Fatigue

• Muscle cramps

• Head drop

• Headaches

• Sleeping problems – getting to sleep, discomfort when lying for long periods, disturbed sleep and nightmares due to nocturnal hypoventilation

• Constipation

• Sexual concerns

• Emotional outbursts – excessive laughing or crying (Emotional lability)

• Difficult emotions, such as depression and anxiety

• Frontal Temporal Dementia in a minority of patients

• Cognitive and behavioural changes – such as, mood swings, apathy, loss of inhibition,

restlessness.

Some of these problems, such as bulbar problems (speaking and communication, more

advanced problems of nutrition and hydration) and cognitive changes, and the more specialist

equipment needed to manage the increasing disability will be dealt with in more detail in later

units. While there are medicinal treatments available for problems suffered by people with

MND (see below), some problems will require only relatively simple (non-medicinal)



adaptations to begin with; however, even simple measures can sometimes radically affect

quality of life and feelings of self-respect and independence. See also the role of carers in

Section 3.2 in conjunction with these adaptations.

Initial adaptations

Eating

When the practicalities of eating become difficult, helping by making simple adjustments can

allow people with MND to continue to feed themselves for as long as possible, for instance by:

• adapting the grip of cutlery and drinking utensils, for example with tubular foam

• cutting the food up first or before serving

• adjusting the height of the eating surface to reduce the distance between the plate

and the mouth

• adjusting the texture of food; softer foods, thicker fluids

• using mobile arm supports to facilitate independent feeding

• encouraging PwMND to sit as upright as possible when eating or drinking.

When swallowing initially becomes a problem or weakened or stiff jaw muscles make chewing

difficult, modifying food textures will make eating safer and easier. Dieticians should give

advice on how and what to eat. Physiotherapists or occupational therapists (OTs) should

advise on head supports and general posture for eating. Suggested medications for saliva

problems is given below; more serious problems with swallowing and saliva will be dealt with

in Unit 4.

Mobility

It is best for people with MND to remain as mobile and supple as possible. However, loss of

muscle function can cause stiffness and joint pain through lack of use, while weakening of leg

and ankle muscles, in addition to fatigue, can cause mild (can be very significant swelling in

some) leg and foot swelling, as well as falling and tripping. Physiotherapists and OTs can

advise on strategies to prevent or alleviate these problems, including:

• a range-of-motion exercise regime – active (by the patient) or passive (with

assistance), including moving the toes and ankle (see Unit 7)

• splint devices to provide support to weakened muscles



• elevating the leg and using an elastic stocking for oedema

• beds and chairs that are not too low or too soft – difficult to get out of

• riser recliner chairs that can help the person to stand from sitting

• clothing that is loose and comfortable but not long enough to trip over

• shoes that are not slippery or that can slip off

• walking aids, such as a stick, walker or stroller

• keeping the floor clear of hazards

• Wheelchairs – manual and electric as appropriate for need.

Muscle and joint pain and difficulties with posture

Even with exercise, incorrect posture caused by weakness in muscles can result in

musculoskeletal pain. For instance, unsupported arms have a tendency to hang and pull on the

shoulder joint; hip pain can result from prolonged sitting in badly supported chairs, while lack

of support from weakened muscles that should support upright posture can cause pain in the

lower back, neck and shoulder blade region. People with MND may also experience muscle

cramps. To correct or alleviate these problems, physiotherapists or OTs will advise on:

• supporting arms with pillows, armrests or tables while sitting

• shoulder slings for supporting arms while walking

• well-supported chairs

• special cushions, and lower back and neck supports to help maintain correct sitting

posture

• stretching, massaging and keeping cramped muscles warm.

Gripping and holding

Weakened hand and wrist muscles can cause difficulties holding everyday objects and the

ability to manage small hand movements, such as turning a key or door handle. As with

cutlery, objects can be adapted or bought to make help make them easier to grasp.

Speaking

Progressive difficulties with articulation, slurred speech and loss of volume all make speaking

and communication more problematic. Initial strategies to aid communication include:



• creating a quiet, calm atmosphere with time for the person to speak

• simplifying the necessity for speech with closed questions (requiring only ‘yes’ and ‘no’

answers), or signals for yes and no

• providing paper and a pen if hand function still adequate

• more attention to physical communication signs, such as facial expression and

gestures

• early referral to a speech and language therapist to advise on communication

strategies

• provision of communication tools/devices.

Unit 4 gives more detail on communication strategies and tools.

Breathing difficulties (dyspnoea)

Some people experience difficulties with breathing due to weakened respiratory (diaphragm

and abdominal and intercostal) muscles. Section 3.3 and Units 7 and 8 give much more detail

on dealing with respiratory problems. However, steps that can be taken initially are:

• providing calm reassurance at an early stage, giving clear information about the

likelihood and implications of respiratory problems, at the same time outlining

palliative help, treatments and interventions, such as the ‘MND Just in Case Kit’

available from the MND Association

• breathing exercises, such as encouraging slow expiration, and chest physiotherapy

• making sure rooms are well ventilated, perhaps using electric fans or ventilators

• using vaporisers or products such as eucalyptus oil dabbed on a handkerchief

• distraction, for instance with music or TV, to calm anxiety.

Choking and coughing

Choking may be due to aspiration, impaired respiration, muscle spasm or acid reflux.

Weakened breathing and diaphragm muscles may also cause difficulties in producing an

effective cough, especially in coughing up mucus, in turn increasing the risk of infections.

• Relieve anxiety about fears, such as of choking to death (extremely rare in MND

sufferers)



• Speech and language therapists (SALT)or physiotherapists should give advice about

‘safe swallow’ and retrieving the cause of choking, teach ‘assisted coughing’

techniques to free mucus from the throat and lungs and clear blocked airways, correct

posture and possibly the Heimlich manoeuvre (rarely necessary).

• Follow advice from SALT on food and fluid consistencies

• Use of a cough assist machine

• Do not slap people on the back if they are choking– it makes them breathe in making

the situation worse.

Fatigue

People with MND can experience fatigue due to declining breathing function resulting from

weakened muscles. There are various ways to combat or adapt to this, for instance:

• conserving energy by concentrating only on important or enjoyable activities

• an OT can help plan a less tiring daily routine

• Medication that assists with fatigue

• aids to make some tasks easier.

Sleeping problems and headaches

Morning headaches and excessive drowsiness may be due to people with MND not breathing

well enough during the night, and some people experience breathlessness when lying down

(orthopnoea). Difficulty moving can also cause some people with MND discomfort at night.

See Section 3.3 for more on respiration. Suggestions to help with general discomfort and poor

sleeping include:

• relaxation techniques or medication to help with getting to sleep

• raising part of the bed to a semi-reclined position or special electric beds for immobile

people

• satin or silk bottom sheets and nightwear to aid turning in bed.

Constipation

Constipation can occur as a result of lack of fibre in the diet, reduced exercise, dehydration,

side-effects of medication or weakened abdominal or pelvic floor muscles making normal

bowel movements difficult. Ways to counteract this include:



• increasing the amount of fibre with ‘high fibre’ foods, such as cereals, vegetables, ripe

fruit, dried fruit or fruit drinks

• drinking as much fluid as possible.

Dieticians can give advice, but if problems persist the GP or MND Specialist Care Team should

advise on hydration, laxatives, other actions or medication (see below).

Sexual concerns

Although MND rarely directly affects sexual desire or ability, these can be affected indirectly

by, for instance, limitations imposed by physical weakness, fatigue, side-effects of medication

or psychological effects of adjusting to a different self-image or role. Many of these areas can

be addressed by:

• some practical adaptations to accommodate, for instance, increasing muscle weakness

• making sure that medical paraphernalia and considerations do not exclude privacy and

time for intimacy

• partners helping with continuing respect and emotional intimacy and encouraging

personal integrity

• professional counselling.

Excessive emotional outbursts

Emotional lability is experienced by some people with MND and can be embarrassing and

frustrating for them and misunderstood by others. Emotional lability can sometimes be

brought on by small amounts of alcohol, although to others the outbursts may look like the

result of excessive amounts of alcohol. Over time people affected may learn how to modify

these outbursts and medication may help control the behaviour. For more information on

emotional lability, see Unit 5.

Difficult emotions

Completely natural but difficult emotions should not be confused with emotional lability.

Difficulties with communication, loss of control, fear and anxiety about the future for oneself

and one’s family, complete change of life, frustration, isolation, anger, denial, pain may all

contribute to the experience of very difficult and strong emotions that the patient may need to

express.

• Allow time and opportunities for these to be acknowledged and discussed.



• If necessary, specialist counselling should be offered.

Anxiety

Feelings of anxiety are common in severely ill people and in carers, especially where there is a

lot of uncertainty. Symptoms of anxiety include:

• tension, worry, fear or dread

• difficulty getting to sleep and sleeping

• restlessness, agitation, irritability

• shortness of breath, tingling fingers, heart racing, frequent need to urinate.

If either the carer or the person with MND is experiencing anxiety or feeling that they cannot

cope, they should contact the nurse or GP to talk about their feelings and symptoms. Just

talking about the feelings may sometimes help, or may uncover practical problems that, when

dealt with, relieve the anxiety. Medical professionals can also help with monitoring and relief

of symptoms. In addition, both the carer and the person with MND might find the following

helpful with anxiety:

• distraction and keeping busy with other diversions, for instance art therapy, crafts,

getting out to a day centre

• complementary therapies, such as aromatherapy or hypnotherapy

• pain relief or relief to help other symptoms

• exercises to help control breathing and anxiety, and relaxation techniques.

Depression

It is important to recognise the natural sadness or low feelings that inevitably come with

serious illness at times, these can become more severe and persistent. These feelings may also

be exacerbated by:

• pain

• episodes of depression in the past

• family worries

• loneliness and isolation

• difficult side effects of some drugs and treatments.



The symptoms are usually a combination of the following:

• low or sad feelings for more than several days in a row

• inability to enjoy things that formerly brought pleasure

• loss of appetite

• feelings of being unable to ‘go on’ and of ‘giving up’

• poor sleep, especially in the morning

• feeling tired all the time

• being snappy or irritable.

However, some of these symptoms, such as loss of appetite and difficulties sleeping, may be

due to the physical side of the illness (including respiratory problems), and not signs of

depression. Once depression is recognised, it is important to talk about it, acknowledge it and

seek professional help. It may be helped by anti-depressants, but also by things as simple as

being made to feel useful and not useless (see section 3.2).

Note should also be taken of carers’ difficult emotions. See Section 3.2 below.

Cognitive changes

It was originally thought that MND did not modify thinking, but research has revealed that

some people do experience changes in the way they think and process information, sometimes

even from the earliest stages of the disease. Even in those affected, the nature of these

changes can vary widely from individual to individual, with some also showing symptoms of

personality and behavioural changes. Effective management strategies can help lessen the

impact of these changes on daily living. For more information on cognitive changes, see Unit 5.

Complementary therapies

Many people with MND explore and use complementary therapies to help alleviate their

symptoms. Anecdotal evidence shows that many find complementary therapies extremely

helpful and that they provide great psychological support. See Unit 7 for more information on

complementary therapies.

Medication

Medication is an integral part of treatment and palliative care for people with MND. While

there is at present no cure for the disease, one drug, Riluzole, has been demonstrated through



research studies to show survival benefit. Many other drugs can be offered to manage the

symptoms and control pain.

Guidance for GPs on specific interventions is available from the MNDA website

(http://www.mnda.org ) in the booklet ‘GP management of MND’.

Many drugs used for MND symptom control have not been specifically studied and licensed in

MND, and prescribers should refer to the rules regarding off license and unlicensed

prescribing. The evidence base for the use of some of these drugs is available in the literature

but is changing all the time with research and literature reviews being carried out. For other

medications there is only anecdotal or indirect evidence including e.g guaifenesin. As with any

drugs, contra-indications should be checked before prescribing.

Pain

Pain is not directly caused by MND but is generally a result of muscle cramps, spasticity, stiff

joints, skin pressure or constipation and will affect 45 to 64% of MND patients at some time.

Muscle cramps – can be relieved by muscle relaxants, but these may also cause weakness and

reduce mobility; helpful drugs include quinine, diazepam and baclofen.

Spasticity – as with muscle cramps, muscle relaxants should be carefully adjusted because of

weakness and decreased mobility; e.g. baclofen; dantrolene sodium, gabapentin and tizanidine

(liver and renal function tests necessary for dantrolene and tizanidine).

Joint stiffness – non-steroidal anti-inflammatory drugs by mouth or suppository e.g. ibuprofen,

ketroprofen, naproxen, diclofenac.

Jaw spasm – baclofen, dantrolene sodium, clonazepam, lorazepam; botulinum toxin may also

be used with caution for spasticity and jaw spasm.

Skin pressure – opioid analgesia with a concurrent laxative to reduce discomfort and distress.

Careful titration to avoid excessive drowsiness and respiratory depression; liquid morphine,

Morphine Sulphate modified release tablets (MST).

Severe pain – alternatives opioids, such as oxycodone, fentanyl patch.

Oedema – a thiazide diuretic. NB this may result in the need to urinate more frequently,

causing problems for care and even apparent incontinence.



Medicinal treatment of other symptoms

Dyspnoea – oral morphine, MST, diamorphine, low dose beta blockers (e.g propranolol) to

reduce production of lung secretions.

Choking – diamorphine; midazolam injection and glycopyrronium bromide; haloperidol,

lorazepam, midazolam liquid.

Saliva management – tricyclic antidepressants, such as amytriptyline at night; atropine eye

drops (sublingually), tablets or syrup; hyoscine sub-lingually, syringe driver, transdermal

patches (Scopoderm); glycopyrronium. Also consider anticholinergics. For thick tenacious

saliva – hydroscopic agents; mucadyne to propanolol, metoprolol, nebulise hypertonic saline;

expectorants: guaifenesin - robitussin. Figure 3.1 shows a saliva management algorithm

created by Specialist MND nursing staff at Salford Royal Hospital in Manchester.

Figure 3.1 A saliva management algorithm



Dry mouth – pilocarpine eye drops, biotene gel, salivant gel.

Constipation – regular aperients: lactulose, docusate, sennoside B, co-danthramer, movicol.

Emotional lability/anxiety depression – fluoxetine, amitriptyline, Selective serotonin reuptake

inhibitors (SSRIs).

Sleep disturbances – anti-depressants decrease REM sleep (period of greatest breathing

disturbance).

Syringe drivers

A syringe driver – a lightweight, battery-operated pump – is used to deliver continuous

medication under the skin, such as easily absorbed diamorphine, over a 12- or 24-hour period.

About eight by three inches, it will fit into a large pocket. A fine needle is inserted under the

skin usually in the upper arm, thigh, stomach or chest. The syringe and driver are attached to a

small infusion set that is held in place with a small clear dressing. The box is connected to the

needle by a fine tube. [Could an illustration of this be given here to make this clearer?] It is

used if there is:

• difficulty in swallowing tablets or reduced absorption from the stomach

• persistent nausea or vomiting that cannot be controlled by oral medication

• extreme weakness or restlessness

• poor pain control with oral medication.

Additional injections can be given to deal with ‘break through’ symptoms, with dosages in the

syringe driver adjusted accordingly thereafter. It is often used in palliative care to help enable

a patient to remain at home. See also ‘Pain relief’ in Section 3.2.



Reflective activity

In your role as a medical practitioner, reflect upon:

• How much information about the different strategies the person with MND is

given, and in what way that information is given

• How much time and attention is given to listening to and understanding the

person’s own wishes, especially if the person has difficulties with communication

• How much attention is given to concerns raised by carers.

In addition, do you think that the strategies you are familiar with are more geared to:

• relieving pain

• aiding independence

• psychological or emotional support?

Section 3.2: Common problems encountered by carers Carers are extremely important in the treatment and care of people with MND. Not only do

they take on increasing responsibility for much of the practical care, often involving learning

specialist techniques, but they are also emotionally and psychologically involved. Support for

carers and the family is an important part of palliative care and taking note of their specific

problems is essential.

Emotional problems

While the emotional difficulties of a person with a terminal illness cannot be underestimated,

it is also emotionally very difficult being a carer. Carers may experience a range of different

emotions at different times, including:

• guilt

• responsibility

• denial

• anticipatory grief

• love



• frustration

• emotional exhaustion

• loneliness

• sadness

• hope

• anger

• feeling trapped or overwhelmed.

Carers should not be made to feel guilty about these natural emotions. It is important that

they have someone to talk to about them, whether a healthcare professional, friend, family

member or counsellor. It is also important that the person with MND and the carer should be

able to be honest with each other about their emotions and support each other in their

difficult times as well as helping each other find opportunities for pleasurable moments, and

they may both need help with this.

It may be helpful for both carers and people with MND if carers do not try to do too much,

even if it means that at times things take longer while the person does things that are still

within their capability. The feeling that one person is doing everything and the other person is

simply a burden can make both parties feel worse.

Carers also need lives beyond their care role to take care of themselves and recover from the

stresses of caring. It is important, therefore, that there are others, either ‘informal’ such as

other family members or friends, or voluntary or paid help, who are able to take over while the

primary caregiver takes a break. The primary care team should also give carers information

about organisations to contact, such as the Leonard Cheshire Foundation, who can guide

carers to short break opportunities and funding.

Anxiety and depression

See Section 3.1 above, as much that applies to the person with MND will also apply to carers.

Depression is not a sign of weakness or something that can be solved with a friendly chat, and

signs of anxiety and depression in carers should always be taken seriously.



Practical problems

As the disease progresses, carers may have to take on increasingly onerous and personal care

of the person with MND. They will need specific advice, for instance, to avoid injuring

themselves while lifting or turning the person, or to ensure that personal hygiene is

maintained to avoid further problems.

Moving, handling and safety

People with MND should be encouraged to remain as independent as possible for as long as

possible by doing things they can manage for themselves. However, professionals, such as a

nurse or physiotherapist, should teach carers what to do, using practical demonstrations, for

when their help is needed. Using a good technique will allow the person to retain their

independence for as long as possible. Make sure that the person always knows what the carer

is trying to do and how they are going to do it before they start.

For advice and guidance on moving and handling, ask for an occupational therapy assessment.

You may be given free specialist equipment to help you, such as hoists, stand aids, transfer

boards or slide sheets. You may also be able to find free training courses, which will teach you

safe handling methods.

NHS Carers Direct offere guidance on moving and handling of patients at:

http://www.nhs.uk/CarersDirect/guide/practicalsupport/Pages/movingandhandling.aspx

See Unit 7 for information on specialist equipment, such as chairs, beds and hoists that can

help when caring for someone with mobility problems.

Washing and personal care

Most people will want to remain as independent as possible in their personal care, but

eventually they might need help with washing and bathing. They may find the loss of privacy

and dignity very difficult and carers should be sensitive to this.

Bathing – Carers will need help either from professionals or with specialist equipment for

helping someone in and out of a bath. Equipment includes bath seats, bath boards and bath

hoists and patients and carers must be instructed in how to use all equipment safely.

Skin care – Skin can become dry or tender if someone spends a long time immobile in bed or a

chair. Damaged skin can become infected and pressure sores can be very painful. To help avoid

these problems, the carer should:



• check the person’s skin every day, looking carefully at pressure points; these are likely

to be on the spine, elbows, hips, heels and ears

• keep bed sheets dry and as free of wrinkles as possible

• use a mild soap

• pat dry with a towel – do not rub

• use moisturiser on pressure points and hard skin

• encourage a change in position every couple of hours, if possible

• inform the nurse or GP as soon as possible if skin becomes red or sore.

Mouth care – This is an extremely important part of daily care for someone who is ill,

especially if they are suffering from bulbar problems (see Unit 4). Good care prevents mouth

sores and may improve appetite. Regular mouth care includes:

• help with regular denture or teeth cleaning (with a soft toothbrush)

• encouraging plenty of fluid intake or sucking ice cubes, gum or pineapple to keep the

mouth moist

• applying Vaseline jelly or lip-balm to the lips

• looking out for and reporting, to the nurse or doctor, problems that may require

special treatment, such as:

• white, patchy areas on the mouth

• red shiny tongue

• cracks in the corners of the mouth.

Meals

There are many reasons why people with MND might start to eat and drink less, from side-

effects of medicine to swallowing difficulties, or just not needing as much energy through less

mobility. For swallowing difficulties see Unit 4. However, the person should be encouraged to

eat and drink by, for instance breaking away from the standard three or four meals per day

and instead:

• offering small portions of food several times a day, using a small plate



• only preparing food when it is wanted

• ensuring mealtimes are relaxed

• offering small snacks or meals frequently

• offering a small amount of alcohol 15 minutes before a meal as an appetite stimulant

• use liquid supplements prescribed by the GP to provide extra nutrition either by

including them in the meal ingredients, as a meal replacement or between meals to

increase intake.

See also ‘Eating' in Section 3.1 above.

Constipation

While normal patterns of bowel movements vary considerably, constipation can cause a lot of

problems for people with MND. Carers can help monitor the situation if constipation is a

problem and alert the GP or nurse if:

• bowels have not moved for two or three days

• there is discomfort or symptoms of constipation, such as bloating

• there is ‘overflow diarrhoea’ – that is, very watery stools around a very hard stool

• if they are unsure what to do.

Incontinence

This may be a problem related to immobility (not being able to get to the toilet on time) or a

bladder infection. These situations may be helped by:

• keeping a commode by the bed

• a glass or two of cranberry juice to reduce acidity and the chance of recurring

infections

• encouraging fluid intake to reduce concentration of the urine which may be causing

incontinence

• adapting clothing to make it easier to remove

• using a mattress or chair protector

• keeping skin as clean and dry as possible to prevent soreness.



If incontinence cannot be prevented, the GP or nurse will supply incontinence pads and be

able to offer further help.

If the person suddenly becomes incontinent or is passing urine frequently or the urine has a

strong odour, the carer should contact the GP.

Nausea and vomiting

Although not common in people with MND, these may be caused by side-effects of

medication, constipation or emotional distress and anxiety. The carer can help by:

• making sure any anti-sickness medications are taken as prescribed

• monitoring the severity of the problem

• keeping the room cool, for instance with a fan

• putting a cool, soothing flannel on the forehead

• having a clean receptacle close at hand just in case

• encouraging the person to take small sips of fluid or to suck ice cubes when feeling

nauseous

• making sure the person avoids acidic foods and fluids.

If the cause is constipation, see above. If there is persistent vomiting, the carer should inform

the nurse or doctor. The way drugs are taken may need to be changed to injection or

suppositories.

Pain relief

Pain can be caused by many physical problems and is often exacerbated by emotional or other

non-physical causes. Carers may need to monitor pain and keep notes to help medical

practitioners assess the pain and decide what course to prescribe. They will need to note:

• where the pain is and how far it extends

• what makes it improve or worsen, and whether painkillers help (if so, for how long)

• the type of pain: stabbing, aching, burning or shooting.

Carers will need to know they should call for help when:

• they are worried



• a new pain arises or an old pain worsens

• pain disturbs sleep

• painkillers are not working well or for very long

• painkillers are causing side effects such as sickness, constipation, drowsiness or

confusion.

Pain relief – In general, carers can help give pain relief by:

• gentle massage or rubbing of painful limbs, using heat pads and other relaxation

techniques

• helping with frequent changes of position

• supporting arms with cushions or pillows

• encouraging regular taking of painkillers, as prescribed, even if there is no pain when

they are due

• ensuring painkillers prescribed ‘to be taken when needed’ are taken only for

breakthrough pain.

For further help with pain relief, doctors can refer patients to:

• pain relief specialists and clinics

• complementary therapists e.g. massage and aromatherapy practitioners

• physiotherapy

• ‘nerve blocks’ in extreme cases.

See also ‘Pain’ under ‘Medication’ in Section 3.1 above.

Syringe driver

Carers and patients may also need to be able to monitor the use of a syringe driver where this

is used to deliver medication continuously. Normally, a nurse will change the syringe once a

day, but the patient or carer may monitor their own syringe drivers. The carer should also:

• look out for signs of redness or discomfort at the needle site

• ensure the driver and needle site are kept dry (bathing is possible with a syringe driver

attached, but care must be taken)



• contact the nurse or doctor if there are any worries or if the battery appears to have

gone flat (light stops flashing; whirring noise stops; syringe is not emptying at expected

rate)

Carers’ needs

In general, carers need:

• appropriate information that is updated as the situation changes, including:

• information about the progression of the disease and likely developments

• where to access specialist help and equipment

• information about financial help, welfare rights and benefits

• emotional and psychological support, including:

• recognition of their feelings, role and responsibilities

• respite time

• practical help and support, including:

• rapid response

• regular assessment of needs

• co-ordinated action

• equipment

• training in use of equipment and handling techniques.

Reflective activity Reflect on your role in relation to carers. Note down:

• any specific help you already give to carers

• areas where you think you could improve the help you give to carers

• training that you might need to improve the quality of your help for carers.

unit 3: care for people with mnd

Documents