Cystic Fibrosis Social Workers’ Group PIP criteria guidance

This is the interim PIP guidance created for and with the Cystic Fibrosis Social Workers’ Group.

Please take the time to look over it and provide us with your thoughts and feedback. We will need your support, thoughts and comments to expand and develop it into a useful tool to help all social workers to provide targeted PIP guidance. Eventually, we hope to supply this as a fully-formed booklet to support CF social workers and as a means of providing information for other professionals who are responsible for welfare support where a specialist social worker is not available.

Your feedback is essential in getting it to the best format and content possible, to become an essential document in PIP applications for individuals with cystic fibrosis. Please do share the document more widely and feedback comments from your wider colleagues.

There is a space below each criteria description for you to feedback on our analysis and interpretation. All comments are welcome.

Please send comments to campaigns@cysticfibrosis.org.uk

Activity 1: Preparing food

a. Can prepare and cook a simple meal unaided. 0 points.b. Needs to use an aid or appliance to be able to either prepare or cook a simple meal. 2 points.c. Cannot cook a simple meal using a conventional cooker but is able to do so using a microwave. 2 pointsd. Needs prompting to be able to either prepare or cook a simple meal. 2 points.e. Needs supervision or assistance to either prepare or cook a simple meal. 4 points.f. Cannot prepare and cook food. 8 points.

Preparing food is key for people with cystic fibrosis. Maintaining a healthy weight can be a huge challenge for someone with cystic fibrosis, and food preparation is vital to this. If the individual uses a microwave to cook in order to avoid fatigue, breathlessness or pain that

would be experienced using a conventional cooker they are likely to obtain two points from the criteria.

Make sure the range of experience is conveyed; an individual’s ability to cope will vary from day to day.

If the individual is too lethargic to want to prepare a meal, describe how they need encouragement and assistance preparing it. The language used should reflect the assessment criteria above.

High calorie needs can equal a significant amount of food preparation. The frequency of meals and snacks needed means it is relentless and often leads to support being required. Supporting information from the CF team can help to demonstrate how high this burden is.

Consider whether the microwave is being used because repeat preparation of meals using conventional methods would be exhausting.

If the individual is tethered to oxygen tubing explain the difficulties this causes and the concern around oxygen being near a naked flame, or safety issues related to tubing tangling with cooking equipment. Assistance may be required for this reason.

Remember, this criteria focuses on preparation of food; the eating of a meal and nutritional requirements is covered separately in Activity 2.

Bob struggles to prepare food after a long day at work. He finds it difficult to lift and move pans due to arthritis in his wrists, and struggles to stand for long by the stove because of back pain caused by coughing. He needs his wife to chop vegetables and transfer the pans for him, and to supervise to make sure he’s not too tired to carry out the cooking safely.

When acutely unwell breathlessness and fatigue are significant, and meals are all microwaved or prepared by someone else.

Bob would therefore satisfy criteria e) e. Needs supervision or assistance to either prepare or cook a simple meal. 4 points.

PIP Social Workers’ Group comments:

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Activity 2: Taking nutrition

a. Can take nutrition unaided. 0 points.b. Needs –(i) to use an aid or appliance to be able to take nutrition; or(ii) supervision to be able to take nutrition; or(iii) assistance to be able to cut up food. 2 points.c. Needs a therapeutic source to be able to take nutrition. 2 points.d. Needs prompting to be able to take nutrition. 4 points.e. Needs assistance to be able to manage a therapeutic source to take nutrition. 6 points.f. Cannot convey food and drink to their mouth and needs another person to do so. 10 points.

Nutrition management plays a major role in life with cystic fibrosis. The assessors will not be able to award points based on this alone, and it is necessary to explain the requirements this leads to.

State any dietetic recommendations in relation to the criteria, in full, on the form e.g. recommended calorific intake.

Consider how a person struggling to maintain a healthy weight (BMI), whilst fighting a low appetite may need prompting and assistance with food consumption. Make sure to include any medical evidence of difficulties maintaining weight, to support the argument.

Calorie intake needs to be increased during a chest infection, as the body is burning a lot of energy fighting the infection. Remember to think about increased needs during these periods, and how frequently this occurs.

Note any mental health issues in relation to lack of appetite and motivation to eat. Reference this in support letters, so that the importance of prompting and assistance is underlined.

PIP Social Workers’ Group comments:

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Fred has a generally poor appetite. He finds that frequent coughing and expectorating of sputum makes food off-putting. Constant pressure to put on weight (as evidenced by supporting letter) means he rarely finds food appealing as he his constantly pressured into eating- Fred’s partner constantly prompts him to eat both snacks and meals.

Fred’s recommended calorie intake is 200% that of someone without CF, as per instructions from his CF team. To reach this he requires dietetic supplements every day in the form of build-up drinks. To mix these (via vigorous shaking) as frequently as they are prescribed is energy sapping, and therefore his partner prepares them and assists him to take the additional nutrition.

We believe this should be interpreted as e) Needs assistance to be able to manage a therapeutic source to take nutrition, which scores 6 points.

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Activity 3: Managing therapy or monitoring a health condition

a. Either –(i) does not receive medication or therapy or need to monitor a health condition; or (ii) can manage medication or therapy or monitor a health condition unaided. 0 points.b. Needs either –(i) to use an aid or appliance to be able to manage medication; or (ii) supervision, prompting or assistance to be able to manage medication or monitor a health condition. 1 point.c. Needs supervision, prompting or assistance to be able to manage therapy that takes no more than 3.5 hours a week. 2 points.d. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 3.5 but no more than 7 hours a week. 4 points.e. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 7 but no more than 14 hours a week. 6 points.f. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 14 hours a week. 8 points.

Managing therapy and monitoring your health condition(s) are an intrinsic part of life with cystic fibrosis. Supervision, prompting and assistance are all factors which count when thinking about how you manage your treatment regime.

It is important to note that the assessment does not look at the availability of help from another person, but rather at the underlying need. As such, claimants may be awarded descriptors for needing help even if it is not currently available to them- for example, if they currently manage in a way that is unreliable but could be made safe with assistance.

Take into account periods spent on intravenous antibiotics. When these are prescribed, they are usually given 3 times in 24 hours, and can take an hour per treatment. Note any assistance required to mix up home IVs. Consider this on top of the usual treatment regime.

Exercise recommended by your CF team can also be included in here, with exercise on prescription being a particularly good example.

Joanne is 17. Her Mum washes and prepares her nebulisers, reminds her to mix her supplementary drinks, assists in putting out her tablets in a pot three times a day and prompts Joanne to do her physiotherapy. The physiotherapy process (two nebulisers, acapella and other chest clearance) takes about 50 minutes twice a day. On top of this eleven hour burden are several hours spent preparing and taking tablets, doing prescribed exercise and an hour each night to set up overnight nasal-gastric feeding.

Joanne’s Mum has always prepared all of her treatments for her, as throughout adolescence Joanne has struggled with treatment adherence. Joanne is seeing a psychologist who is helping her address issues and understand how important her prescribed treatments are, but it is a slow process.

Joanne would therefore f) need supervision, prompting or assistance to be able to manage therapy that takes more than 14 hours a week. 8 points.

It is important to demonstrate to the assessor the amount of time spent taking medication and therapy. Even relatively well people with cystic fibrosis will have a high burden of treatment in order to stay well.

PIP Social Workers’ Group comments:

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Activity 4: Washing and bathing

a. Can wash and bathe unaided. 0 points.b. Needs to use an aid or appliance to be able to wash or bathe. 2 points.c. Needs supervision or prompting to be able to wash or bathe. 2 points.d. Needs assistance to be able to wash either their hair or body below the waist. 2 points.e. Needs assistance to be able to get in or out of a bath or shower. 3 points.f. Needs assistance to be able to wash their body between the shoulders and waist. 4 points.

To qualify as able to do the activities, they must be completed safely, reliably and in a reasonable amount of time. If doing the activity causes dizziness which would make it unsafe, takes more than twice the length of time it would take a healthy person, or cannot be carried out as often as it should be- then you are considered unable to do it.

Breathlessness often makes washing a bathing challenging, more so with an active chest exacerbation.

Consider any help needed getting into or out of the bath because of pain, breathlessness or fatigue.

If someone helps to wash hair whilst a port is accessed, or line in, mention this on the form and to the assessor.

Mention any equipment used to make showering easier e.g. shower board.

Prompting to wash or bathe may be particularly necessary when someone is acutely unwell and washing seems overwhelming or unimportant.

When attached to oxygen washing and bathing is further complicated and this should be shared with the assessor.

Simply being so fatigued by your condition that you need to be motivated or supported in washing is key detail to explain, even if this is not the case the whole time.

Elsa has 75% lung function. She has a two week course of IV antibiotics roughly every 3 months. Elsa’s joints are sore and swollen most of the time due to CF arthropathy, but become even worse when she has a chest exacerbation. She has generalised joint pain, but particularly struggles with her hands and knees. Because of this, washing and bathing are hard work and Elsa often needs prompting and encouragement to undertake it. Her Mum often encourages her to bathe and makes sure she is around to assist Elsa with getting in and out of the bath, because her joints are sore and painful.

Elsa needs prompting to be able to wash or bathe more than 50% of the time due to pain and fatigue caused by the pain, and when unwell also needs assistance getting in and out of the bath. Elsa does not currently need assistance more than 50% of the time, and we believe would therefore likely qualify for 2 points for prompting.

PIP Social Workers’ Group comments:

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Activity 5: Managing toilet needs or incontinence

a. Can manage toilet needs or incontinence unaided. 0 points.b. Needs to use an aid or appliance to be able to manage toilet needs or incontinence. 2 points.c. Needs supervision or prompting to be able to manage toilet needs. 2 points.d. Needs assistance to be able to manage toilet needs. 4 points.e. Needs assistance to be able to manage incontinence of either bladder or bowel. 6 points.f. Needs assistance to be able to manage incontinence of both bladder and bowel. 8 points.

Digestive issues, stress incontinence and pain and breathlessness are all issues which can affect how well someone with cystic fibrosis can manage their own toilet needs.

Sometimes joints are painful and can make movements such as lifting up from the toilet more difficult than it would otherwise be.

Challenges in assessing the correct dose of supplementary pancreatic enzyme, taken with every item of food or fatty drink can lead to constipation or runny stools- which requires staying close to a toilet, and possible leakages resulting in having to wear an incontinence pad.

If acutely unwell, or reaching end stage cystic fibrosis, patients may be too exhausted and breathless to manage their toilet needs independently and may require significantly more assistance.

PIP Social Workers’ Group comments:

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Gertrude generally suffers from tightness of the chest and wheezing, despite having reasonably good lung function. This leads to regular coughing, and causes her to suffer with stress incontinence. She uses incontinence pads to limit embarrassment when in public, and likes to be near to a toilet at all times.

Gertrude’s use of incontinence pads means she would likely score 2 points b) Needs to use an aid or appliance to be able to manage toilet needs or incontinence.

Activity 6: Dressing and undressing

a. Can dress and undress unaided. 0 points.b. Needs to use an aid or appliance to be able to dress or undress. 2 points.c. Needs either -(i) prompting to be able to dress, undress or determine appropriate circumstances for remaining clothed; or (ii) prompting or assistance to be able to select appropriate clothing. 2 points.d. Needs assistance to be able to dress or undress their lower body. 2 points.e. Needs assistance to be able to dress or undress their upper body. 4 points.f. Cannot dress or undress at all. 8 points.

Be sure to think through each stage of the dressing process. There are many elements which may be affected by cystic fibrosis and its complications.

Joint problems, as an ancillary condition to cystic fibrosis, may make certain movements uncomfortable or difficult, and mean that assistance is needed to dress. Such problems can be exacerbated by an active chest infection.

If hands are particularly badly affected, buttons, zips and other fastenings may be a particular issue.

Bending over to put on shoes and socks may trigger severe breathlessness, possibly leading to dizziness and fatigue. (2 points)

Dressing may lead to breathlessness and fatigue, therefore requiring assistance from to get dressed and undressed. (4/8 points)

An individual may need to rest part way through dressing to catch their breath, meaning it takes more than twice the amount of time it would normally take a healthy person.

Putting on a bra can be challenging, both because of how it restricts breathing and also managing the fastenings behind ones back.

Clothing can often be uncomfortable- being too tight around the lungs or stomach. Individuals may need prompting to get dressed into clothing appropriate for the occasion rather than what is most comfortable. (2 points)

Matilda has low lung function and is on the transplant waiting list for new lungs. She is reliant on overnight oxygen and also uses it when active. Breathlessness is often present, and bending over exacerbates this further. When very breathless Matilda can become dizzy and need support to steady herself- this makes getting dressed a very slow process, with lots of breaks. Any sort of activity is tiring for Matilda, due to the constant difficulty breathing, and she needs assistance dressing and undressing if she is to do anything else during the day.

Because Matilda cannot dress or undress in a timely or safe manner, she would be likely to score 8 points in our view.

PIP Social Workers’ Group comments:

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Activity 7: Communicating verbally

a. Can express and understand verbal information unaided. 0 points.b. Needs to use an aid or appliance to be able to speak or hear. 2 points.c. Needs communication support to be able to express or understand complex verbal information. 4 points.d. Needs communication support to be able to express or understand basic verbal information. 8 points.e. Cannot express or understand verbal information at all even with communication support. 12 points.

Communicating verbally is not a problem that is associated with cystic fibrosis. It is, however, worth considering an individuals’ specific circumstances to identify problems and disability in this area.

Lack of confidence may be an issue in patients with cystic fibrosis. Patients that cough or easily get out of breath when they talk may struggle to make themselves understood and feel acutely self-conscious. They may then panic and feel that they cannot communicate effectively. An individual may therefore need support when expressing themselves.

Anxiety and depression is often a huge barrier to good communication, and the nature of an illness like cystic fibrosis means worry and anxiety is par for the course. Anxiety and worry may lead to struggles in communicating effectively and also in comprehending information given to the sufferer. Levels of comprehension may be dependent on the extent of the anxiety.

Identify any issues around engaging with the whole of the Multi-Disciplinary CF Team regarding health issues. Many adults and most teenagers bring parents/others to clinic. A lot of prompting goes on about giving relevant information and support in receiving complex information from the team.

PIP Social Workers’ Group comments:

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Bertie uses a Non-invasive ventilator (NIV) overnight, and during the day when he is struggling to maintain his oxygen levels. It is a noisy machine which forces air into his lungs. He is largely house bound and is waiting for new lungs on the lung transplant list.

The NIV covers most of his face, and obscures his mouth making speaking very difficult. His Mum often has to explain things to others on Bertie’s behalf, as taking off this mask would leave him very breathless.

Bertie’s reliance on this equipment and the need for communication support whilst using it means he may score 8 points on this criteria.

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Activity 8: Reading and understanding signs, symbols and words

a. Can read and understand basic and complex written information either unaided or using spectacles or contact lenses. 0 points.b. Needs to use an aid or appliance, other than spectacles or contact lenses, to be able to read or understand either basic or complex written information. 2 points.c. Needs prompting to be able to read or understand complex written information. 2 points.d. Needs prompting to be able to read or understand basic written information. 4 points.e. Cannot read or understand signs, symbols or words at all. 8 points.

Reading and understanding signs and symbols is not a problem that is associated with cystic fibrosis. It is, however, worth considering specific circumstances to potentially identify problems and disability in this area.

Patients who struggle with anxiety and depression may struggle to comprehend complicated letters which will lead to them panicking, and often putting them in a drawer and not responding. They may need help from family, friends or a welfare advisor to ensure they are comprehended and dealt with.

Certain medications can make the thought process less clear. This should be backed up with medical supporting evidence. (2 points)

Severe breathlessness (especially if accompanied by low oxygen saturations) and fatigue can lead to a ‘foggy head’, and lower levels of comprehension. (2 points)

PIP Social Workers’ Group comments:

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Norma is 49 and has not long been diagnosed with cystic fibrosis. She has always had regular chest infections, but the doctors put it down to asthma and didn’t test her for cystic fibrosis until later in life. The diagnosis has come as a shock to her and her family and Norma has developed depression as a reaction. She is struggling to comprehend the new burden of treatment and is finding any additional information a struggle to understand. Her CF team have found Norma struggles to comprehend information given to her in written form, they have to go over it verbally with her.

Norma may score 2 points in this section to the prompting needed to be able to understand complex written information.

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Activity 9: Engaging with other people face to face

a. Can engage with other people unaided. 0 points.b. Needs prompting to be able to engage with other people. 2 points.c. Needs social support to be able to engage with other people. 4 points.d. Cannot engage with other people due to such engagement causing either – (i) overwhelmingpsychological distress to the claimant; or (ii) the claimant to exhibit behaviour which would result in a substantial risk of harm to the claimant or another person. 8 points.

Engaging with other people face-to-face is not a problem that is associated with cystic fibrosis. It is however, worth considering specific individual circumstances to potentially identify problems and disability in this area.

Barriers to engaging with people could include anxiety, stress or depression. The need to use an oxygen mask would make face-to-face interaction difficult.

In someone who has been isolated due to ill health, engaging with people may cause anxiety. If a familiar person is there to support a patient it can help them to feel slightly more confident when answering questions. (4 points)

Extended periods of hospitalisation may lead to a patient having panic attacks or palpitations in public. This must be explained on the form and to the assessor.

People with cystic fibrosis may feel embarrassment over the need to use the toilet with urgency, coughing fits, not being able to keep up with their peers and taking medications in public. These factors may all lead to greater reticence when it comes to engaging with other people face to face.

Identify any issues around engaging with the whole of the Multi-Disciplinary CF Team regarding health issues. Many adults and most teenagers bring parents/others to clinic. Some people may find engaging with medical professionals particularly challenging, especially at a time of heightened anxiety such as before clinic, when they may worry about how their lung function, weight and other numbers will be and the information they will be given. This makes the need for help with the communication more likely.

Hannah has spent a large chunk of the last year in hospital chronically unwell. Since being discharged she has found herself to be very low in confidence and finds engaging with people outside of her immediate family a struggle.

She is reluctant to contact friends, make phone calls or attend social activities. Her sister often accompanies her when out and about make her feel more comfortable and prompt Hannah to try to re-establish her confidence.

Hannah needs prompting to be able to engage with other people, and would likely score 2 points.

PIP Social Workers’ Group comments:

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Activity 10: Making budgeting decisions

a. Can manage complex budgeting decisions unaided. 0 points.b. Needs prompting or assistance to be able to make complex budgeting decisions. 2 points.c. Needs prompting or assistance to be able to make simple budgeting decisions. 4 points.d. Cannot make any budgeting decisions at all. 6 points.

Having difficulty managing budgeting decisions is not a problem that is associated with cystic fibrosis directly. It is, however, worth considering your own circumstances to potentially identify problems and disability in this area.

For example, fatigue, depression, anxiety and stress may individually or collectively mean that you need support to make simple or complex budgeting decisions and, if applicable, these need to be discussed with the assessor.

Similarly, poor health can make a situation feel overwhelming and lead to the need for assistance when making decisions.

Explain who deals with finances if it not the patient, and the reason why this happens.

PIP Social Workers’ Group comments:

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Mike has recently been referred for a transplant assessment, as the doctors have told him his health is deteriorating and no longer responding to the treatments on offer. This has led to him suffering with anxiety, and struggling to cope with everyday issues outside of his health situation.

His Dad currently deals with all of the household finances, bills and benefits applications as Mike cannot face them, and is overwhelmed by the task.

Because Mike needs prompting or assistance to make complex budgeting decisions he may acquire 2 points on this section.

Activities eleven and twelve are the only two taken into account when assessing an individuals’ eligibility for the Mobility element of Personal Independence Payment.

Activity 11: Planning and following journeys

a. Can plan and follow the route of a journey unaided. 0 points.b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points.c. Cannot plan the route of a journey. 8 points.d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points.e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10 points.f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points.

People with cystic fibrosis may experience a wide range of barriers to being able to plan and follow a journey.

Fatigue and breathlessness must be taken into account when planning any journey. It may be the case that using sets of stairs on public transport, at a train station for example, could cause a physical reaction that makes the journey unsafe. The fear of feeling unwell when facing such an obstacle may cause overwhelming psychological distress.

The length of time a journey takes can leave a patient exhausted and will need to rest as soon as they return home. Often having a knock on effect with treatments and eating due to being too tired. This means the activity is not repeatable or safe.

Following an unfamiliar route would pose significant problems as it may turn out to be further than the individual can walk without getting chronically breathless or fatigued. Patients may therefore need assistance to reach the point of the public transport, or have someone with them to provide support. (10 points)

Arthur gets very nervous when going on a journey he hasn’t done before. On familiar journeys he has learnt where the car parking spaces closest to the venue are; which railways stations have lifts rather than stairs and how long each journey takes when taking into account breaks for episodes of coughing, fatigue and going at a far slower pace than most people would. Managing an unfamiliar journey with unknown factors makes Arthur very anxious- he is particularly worried about having to rush which is likely to lead to coughing and possible dizziness and pain. Arthur’s mother has to encourage him to leave the house in these circumstances, and often spends extended periods of time calming him down and slowing his breathing before going out.

Because Arthur needs prompting to be able to undertake any journey to avoid overwhelming psychological distress, he has the potential to score 4 points.

Taking a journey on public transport may cause high anxiety. The individual may worry whether they can make it to the transport without becoming fatigued, breathless or in pain. Once on the transport they may worry about coughing, exacerbating sputum, urgent toilet needs and the results of stress incontinence. (4/10 points)

If making a journey regularly takes more than twice as long as it might take a healthy person, perhaps due to fatigue, coughing or pain, then highlight this to the assessor.

Anxiety, stress and/or depression might cause a person with cystic fibrosis to be unable to plan effectively or follow a journey to completion. If the logistics or physical impact of an unfamiliar journey are overwhelming, this should be made clear to the assessor.

Worry about picking up infections from other people is commonplace in cystic fibrosis, and public transport is an uncontrollable environment which may cause severe anxiety in some people with cystic fibrosis. Infections which may result in a simple cold in healthy people can be devastating for those with cystic fibrosis.

Equally, it is vitally important not to come into contact with someone else with cystic fibrosis who may be harbouring dangerous bacteria. For some patients this can be a debilitating worry, causing overwhelming psychological distress. (10 points)

PIP Social Workers’ Group comments:

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Activity 12: Moving around

a. Can stand and then move more than 200 metres, either aided or unaided. 0 points.b. Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided. 4 points.c. Can stand and then move unaided more than 20 metres but no more than 50 metres. 8 points.d. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres. 10 points.e. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. 12 points.f. Cannot, either aided or unaided, –(i) stand; or(ii) move more than 1 metre. 12 points.

Activity 12: Moving around is a key assessment criteria for most people with cystic fibrosis but also creates a challenge in describing the particular struggles that people with cystic fibrosis face. Many people with CF will struggle to walk even short distances comfortably.

When looking at this criteria it is vital to keep in mind the principal that the activity must be completed safely, to an acceptable standard, in a reasonable amount of time and to be repeatable. Breathlessness, fatigue and pain should all be considered in conjunction with the framework.

• Many patients can walk 50 metres, but their ability to do this repeatedly, reliably and safely is not guaranteed. They may be able to complete the stipulated distance, but would have to stop to rest, cough and recover before walking any further. • Good days may lead to an individual being able to walk further, but consider position they are in at least 50% of the time or more.

• People with cystic fibrosis who endeavour to walk stipulated distances may find that the exertion has a knock on effect on their ability to do other things such as bathing, preparing food or carrying out their prescribed medical treatments.

Maisie is 29 and works full time. She has an FEV1 of around 48% when well, and IVs roughly every 6- 8 weeks. When on IVs Maisie becomes very breathless, tires easily and finds just getting around the house exhausting. Her husband gets her food, brings her magazines and fetches things from upstairs so she doesn’t have to.

When relatively well, Maisie can walk at a slow and steady pace. She can get from her car to the supermarket, but has to stop to cough, and it takes her twice the time it takes her healthy friends.

She often has more energy in the morning, but finds by the afternoon she could not walk anywhere near as far.

Because the time Maisie spends unwell and on IVs does not total 50% or more of the time, the criteria she is likely to fit will be the lower point scoring one.

Breathing will become increasingly laboured in the run up to a chest exacerbation, which will make an individuals’ walking ability even more limited than usual. It may take a patient some time to recover to their normal state following on from intravenous or oral treatment of their infection.

• Intravenous antibiotics have many side effects, and both this and the gruelling IV routine may lead to exhaustion and heightened issues walking around. The effects of fatigue must not be underestimated.

• Poor appetite and low body weight may impact on a persons’ ability to get around, as both of these may result in a lack of energy.

Carrying supplementary oxygen and/or struggling because of joint pain are also factors when considering the ability to move around.

PIP Social Workers’ Group comments:

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