It’s all improv.
It’s sometimes difficult enough to have conversations with patients when they’re in a relatively good mental state. It can feel overwhelmingly daunting to connect with people who have additional communication difficulties, whether through cognitive impairment (eg dementia or learning disability) or overwhelming emotional states (eg paranoia).
Creative communicating makes best use of the communication skills each patient has available, like the poetic meanderings of someone experiencing psychosis. It also benefits from staff’s ability to imaginatively work out how best to help the individual to express themselves and be understood. Let rip with your inner artist, mime actor and Google images researcher! Boost your impact as a creative listener as well as a creative conveyor of information and conversation.
- In the resource room (and how fab that is), a staff nurse created a wall of Information including community resources and women-specific resources. The Wall of Information has a big sign: ‘Services you may need after discharge’ and a series of laminated A4 posters, each with information, created by staff, about local and national services. The room also has a PC for staff to use to help with relevant information gathering. Other wards take samples of the info to benefit their patients.
- The patient’s story is printed and attached to the beginning of the patient’s chart. Every caregiver who must care for the patient is expected to read the one-page document just as they read the other information on the chart. (From If Disney ran your hospital by Fred Lee)
- Video or DVD is used to support patients. A video of family and friends for example, can be comforting. Videos may also contain information about the patient’s individuality such as the things they like and dislike.
- Posters have been produced to offer staff advice on how to best communicate with different people.
The following is taken from TalkWell, our conversation guide for ward staff.
Staff are faced each day with having particularly complex conversations with patients, conversations which can be very emotionally and intellectually demanding. These conversations might be exacting because a patient is in a particularly fraught state or because they have additional communication disadvantages. And often, both.
So staff have to keep track of the ‘facts’ as well as paying attention to the feelings. Added to this, they’re trying to notice what isn’t being said. And on top of all this, they’re trying to manage their own feelings! These kinds of pressures are why good support for staff is so important. But being very aware of the thoughts and feelings going on in the patient’s mind and in their own is a mentalising bonanza!
Confusion and misinterpretation are often major features of these interactions. If you’re feeling confused, it’s likely to be much more bewildering for the patient who has the double challenge of mental illness and an additional communication complication.
There’s a fabulous approach to communication with people who have profound and multiple learning disabilities, called intensive interaction. Intensive interaction is about using everything that your ‘communication partner’ provides, and because it’s designed for people who use little or no speech, body language and behaviour are carefully considered. A really valuable concept from intensive interaction is about taking the lead from the other person, building on the communication methods, style, pace etc they use, enjoy and can comfortably manage.
1. The individual
- To state the obvious, patients with additional communication problems are very individual in what they find helpful
- It’s crucial to encourage the person to communicate in the ways that work best for them and which build on their strengths, interests and motivation.
- People’s health can aggravate or cause communication problems, especially issues of hearing, sight, medication, pain, fatigue or even ill-fitting dentures.
- Allowing a generous amount of time for the patient to understand and respond to you really helps
- It can unfortunately happen that given all the pressures on a shift, especially with many patients with multiple health and communication complications, staff can unintentionally say or do things which make the patient feel belittled. Substantial communication impairment doesn’t mean the patient isn’t very aware of people’s attitudes to them.
- ‘Life factors’ shared by a member of staff and a patient can help the patient feel more comfortable and confident about communicating eg age, gender, ethnicity
- You too will have your own attitudes, feelings and beliefs, and these will inevitably influence the way you see and interpret the person’s needs, choices and interests.
- Success is highly motivating for staff and patients! Finding effective (especially breakthrough!) ways of communicating with individuals enables them to be more responsive and staff to appreciate them more. So it’s worth investing time considering what is it about the person which makes you feel you want to respond and what’s getting in the way.
- When someone does or says something that seems weird and/or’ wrong’, it’s best to give them the benefit of the doubt, eg by thinking about different possible interpretations for these.
- The stronger your relationship with the patient, the easier and more satisfying the communication.
- Gentle humour can often help a situation where there’s misunderstanding. But humour can also unintentionally add to the confusion and make the patient feel vulnerable or belittled.
- Lots of things can help prepare for creative conversations eg reading patients’ notes, talking to colleagues and also, where appropriate, to patients’ friends or relatives
- Speech and language therapists are endangered species in mental health inpatient care, but their fabulous skills are worth tracking down in other services, including the community. Psychologists are also specialists in communication especially in relation to people’s behaviour and emotions. And OTs are some of the most creative professionals in the universe.
- Asking the patient where they’d feel most comfortable chatting, eg in the office, their bedroom, during a walk outside
- Ensuring privacy, both for that patient’s sake and to protect other patients from what could become a distressing experience
- Making sure that where the conversation is happening is as comfortable as possible in relation to practicalities such as seating, heating, lighting, distractions (including any which exacerbate psychotic symptoms). For example:
- smaller spaces are more private and quieter and can make it easier for both staff and the patient to focus.
- there’s a surprising amount of background (and often foreground!) noise on wards from talking, shouting, TV, radio, trolleys, outdoor traffic…
- comfortable furniture and attractive homely decorations are good for self-esteem, motivation and concentration
- Making sure you’ve got enough time, to build up to and have the conversation but if it distressed the patient, to support them afterwards
- Processing information and formulating a response can be strenuous and daunting for patients with additional communication impairments. Encouraging them to take their time reduces the sense of pressure and makes it easier for them to express themselves
- Working out, perhaps with the patient or someone who knows them well, what’s the best time for them in terms of:
- concentration and mental clarity
- symptoms (mental and physical)
- energy levels
- planned activities (including visitors)
6. Building up
- Getting the patient’s attention before starting the conversation; eye- contact is essential and touching their hand if that’s appropriate
- Using the patient’s name more than you usually would to hold or regain their attention and to reinforce yours
- Reassuring the patient by saying you’re there to understand and to support them and asking them what they would find helpful
- Starting with gentler topics, checking how they’re feeling, helping them feel more confident about how they’re coping with their situation, being patient, taking the conversation at a pace they’re comfortable with and can follow and being comfortable with silences.
- Going easy on introducing new information
- Being honest! Including if services or staff have let the person down. (Chapter 11 on apologising is likely to help with this!)
- It’s all a bit like being in a foreign country where you don’t understand the language, so whatever you find, or would find, helpful in this situation is also likely to help the patient, for example:
- using gestures or demonstrating what you mean as well as saying it can be very helpful. (And fun!)
- speaking slowly, using simple words, short sentences, easy topics and repeating important points no fancy words, jargon, idioms, abbreviations or brain-tangling sentence structures
- Avoiding analogies and metaphors which can be very confusing. For a patient with communication difficulties, trying to understand some flowery language is like playing Scrabble with only blank tiles. No one wins and we don’t know the score. (Thanks to Nick McMaster for that memorable description!)
- A handy, slightly surprising tip is to make your language a little more formal than usual. You could try imagining you’re speaking to an overseas’ dignitary you particularly respect, or a member of the royal family if you’re not a keen republican. This approach tends to result in clearer pronunciation, fewer idioms and of course the bonus of the patient feeling valued and respected.
- Simple yes/no questions can help get the conversation underway
- Using people’s names rather than referring to them as ‘he’, ‘she’ etc. With people who have severe communication impairment, it can even help to refer to yourself and the patient by name instead of saying me, you etc.
- It can be clearer, as well as gentler, to give positive rather than negative instructions, for example saying “Please can you come to dinner?” rather than “Don’t go into your room now.”
- The aim is speaking clearly and calmly – especially at times when you’re under the most pressure and it’s hardest to achieve this!
- Friends, relatives and staff who know the patient well will be familiar with the person’s own vocabulary, which may have developed from local dialects, having English as a second language, memory loss and/or family traditions.
- Being aware of your accent and the patient’s. Someone who has spent their life in Liverpool, Llanelli or Lagos may have difficulty understanding what the queen is saying – whereas she has lots of experience of understanding pronunciation differences from around the globe. (But she is unlikely to become a member of the ward team.)
- If you or the patient have repeated what you’re trying to convey once or even twice and the other still doesn’t understand, it’s time to try a different route.
- Happily, spoken words don’t have the monopoly on communication and are often the least effective. Alternatives include:
- Signs and gestures
- Pictures, photos, clip-art
- symbols (eg Widgit)
- written words
- objects – where possible, this is the least ambiguous way of showing what we’re talking about
- The more that a person has direct experience of the choices, the sounder the outcome. It’s difficult for anyone to make choices in the abstract, but this especially so if someone has an additional communication complication. For example, with housing options, the best is when someone can actually stay in a potential new home. Followed by being able to visit it or talk to people who live (or work) there. Minimally, seeing pictures (or a video) of it with additional information and being able to have their questions answered.
- It’s easier to start with small choices before moving on to bigger ones, and to deal with just one choice at a time.
- The starting point of course is finding out as much as possible about what the patient can understand, from specific vocabulary to length of sentences, as well as alternative methods of communication like pictures or symbols.
- It’s very tempting, especially on hectic shifts, to pretend to understand what the patient is saying. There’s a balance between avoiding frustrating the person by acknowledging that despite your best efforts you can’t understand what they’re communicating, and being honest and avoiding acting on an incorrect guess about what the person means or wants.
- Additional complications arise when someone seems to understand but doesn’t. It could be a straight misunderstanding, or they could be agreeing to prevent causing difficulties. People may understand less language than they seem to because there are a surprising number of cues in a given situation, eg the time of day and routines, or your tone of voice and facial expressions. Even asking if someone understands what you’re saying is no guarantee as it’s tempting for people to avoid embarrassment of further confusion by simply saying they do understand.
- An invaluable safeguard is to check with the patient, for example to use their own words (or gestures or pictures) to express what they think you’ve said. And for particularly important matters, it’s best to check with people who know the person well to see if your understanding of their views fits in with the person’s usual preferences and needs.
12. Body language
There’s that much-touted thing about 70% of communication being non-verbal. Body language is particularly important with people who have major problems in communicating clearly using words. So body posture, gestures, facial expressions, and eye movements aren’t just a bit of a bonus, they’re the essentials. A truly holistic approach is needed, using everything available. All your resourcefulness and creativity and acknowledging all the communication indications the patient gives you. For example, communication-impaired people’s actions or behaviour (like the rest of us!) are usually very significant, not arbitrary. This is particularly important, but difficult, to remember if the person is behaving in a very challenging way.
The following may help in communicating with patients who have additional communication challenges, especially if things are particularly fraught.
- If possible, sitting down next to the person so that you’re on the same level, and generally avoiding them feeling threatened by you standing too close or seeming to tower over them.
- Helping the person feel they have your full attention and enough time for them by being as still and calm as possible.
- As well as your body language, conveying how you feel, a lot can be picked up from the patient’s body language eg their facial expressions, body position and movements etc.
13. Distressed patients
When they are with someone sympathetic and supportive, crying can be one of the most healing experiences for patients. The act of crying releases tension and dilutes painful feelings and thoughts. This effect can be made even more beneficial if they’re with someone who is accepting of them and the state they are in. For understandable reasons, staff can want to urge patients to stop crying, perhaps because it saddens the member of staff or they feel crying prolongs the patient’s distress.
It’s certainly true that when someone is crying a lot it’s hard to have a conversation. But if the essence of conversing is about communicating rather than specifically talking, then it’s clear just what powerful communication is going on. The patient is conveying unambiguously how much emotional pain they are in. And the staff member who sits alongside them, gently and supportively, is conveying that they recognise this and care about them. Two of the most difficult aspects of being with very distressed patients are coping with them crying and balancing being optimistic with not belittling the genuine, often overwhelming challenges they’re facing.
The following can help.
- Staff don’t actually need to say anything. Patients find it comforting just to have someone sitting with them
- It’s definitely better to say nothing than to ask a patient to stop crying!
- Patients really appreciate being given time to stop crying, at their own pace. Some may then want to talk about what’s going on for them. Others may feel it’s been helpful enough just to have ‘got it out their system’ and not want to talk at that stage.
- Anything you can do which helps the patient feel better about themselves, their coping skills and their problem-solving abilities will be really beneficial. For example, asking them if they’ve experienced something like this before, what have they found helpful? If they’re very stuck, becoming one stage removed can free things up a bit, eg asking them what they might say to a friend in a similar situation.
- Trying to avoid going off to get mountains of tissues or distracting the patient so they stop crying – go with the flow and be comfortable with the tears without feeling that you are responsible for making them stop. Sometimes staff may want the tears to stop because they feel uncomfortable or awkward. But if the patient is comfortable enough to cry in the company of someone else, this should be supported rather than suppressed.
If patients feel they ‘shouldn’t be crying’ (perhaps especially male patients), odds are that they’re feeling some combination of:
- it’s wrong, inappropriate or ‘weak’ to cry
- you don’t recognise how serious the causes of their distress are
- you feel embarrassed or awkward with someone who is crying
- you’ve got old-fashioned views about “what men are like”!
- you don’t accept them as an individual, complete with vulnerabilities as well as strengths
Nurses and patients have told us that these sorts of phrases are really helpful when a patient is crying:
- Take your time
- I’m sorry this is so painful for you
- You let it all out. It’s best to have a good old cry
- It’s OK. Have a tissue.
- It’s not surprising that you find talking about this so distressing.
- What would you find helpful right now?
14. Angry patients
This is a whole book in itself! (Indeed, a whole bookshelf in a bookshop.)Talking with people who are very angry isn’t exactly a normal ‘conversation’, but it’s still about two, or more, people communicating with each other. Staff usually have good strategies to use in these situations, but the intense pressure they are feeling means that it’s particularly important to listen very carefully.
Starting with the predictable non-starters!
- Shouting (!) let alone swearing
- Threatening. It’s particularly unethical to threaten the use of rapid tranquilisation, seclusion and other ‘coercive’ responses
- Personal insults (!)
- Standing too close to the person, especially if your face is then very close to theirs
Of all the situations described in the book, angry, confrontational conversations are the most important times for staff to consciously mentalise – i.e. both to think very specifically what the patient is thinking and feeling and to recognise what they themselves are thinking and feeling. Our advice is:
- Giving the person space – physical space by not standing too close to them, emotional space and the sense that they’re not being rushed or pressurised
- Listening super-carefully – to what the patient is saying, what they’re not saying and what they are feeling
- However hard it is, trying to use a calm and non-shouting voice
- Acknowledging their feelings
- Asking the patient what they would find helpful right now
- Apologising if it’s thought this will help
- Giving reasons for whatever is being said or suggested
- Seeking common ground. Asking the patient what would help resolve the conflict, and immediately trying to find all the points, however small, where there is agreement. Compromising. Being flexible. Finding a solution that’s agreeable to the patient unless it’s one that is genuinely unacceptable.
- Enabling the patient to save face or ‘climb down gracefully’. Ideally this should be because a resolution is found which is acceptable to you and the patient.
15. People with learning disabilities
The learning disabilities field has produced some of the most creative and effective communication approaches eg intensive interaction, total communication and symbol systems. (As well as kids’ buggies, job coaches and Wolf Wolfensberger’s searing analysis of the specifics of how stigmatised people are socially devalued.)
There aren’t any crucial considerations or approaches for communicating effectively with people with learning disabilities beyond those outlined in the points above. So we’d like to mention a slightly tangential but very common issue, that of age-appropriateness. Because people with learning disabilities are, by definition, developmentally delayed, there is often a pull towards behaviours, activities or products associated with considerably younger people. While it’s obviously not on to treat adults like kids, there is a frequent dilemma when the individual themselves has interests, abilities or pleasures which aren’t ‘appropriate’, or at least conventional, for someone of their age.
Our view is that unless there are disproportionate penalties in terms of the person’s emotional or skills development, their self-identity and/or how others regard and respond to them, it’s important to let them express themselves in this way. We all enjoy products or activities intended for younger people – that’s often part of the pleasure. A handy principle is to support the most age-appropriate version of an activity, leisure product, item of clothing etc that they can manage and enjoy.
16. Talking with people who are experiencing psychosis
Perhaps the most important thing to remember is that people who have some thoughts which are highly unusual – or very disturbing – will also continue to have ‘normal’ thoughts, and certainly normal feelings. And when part of your life is feeling very out of control, it is stabilising and comforting to have an ordinary conversation with someone else. So don’t avoid talking to people who are having psychotic symptoms!
One of the main difficulties a patient may be experiencing is the effects of their medication. This can make concentrating, or even thinking clearly, very difficult. You can work out how complex a conversation they can manage by starting with simple, everyday things, such as asking them how they’re feeling, or if they’ve had visitors. If they have been involved in a particular activity in the last day or two, you could ask how that went. Or instead of asking them something, you could kick off with something about you – a programme you saw on TV last night, or what your weekend plans are.
You may be unsure how to respond when they talk about things which don’t seem ‘real’ or seem very peculiar. What should you do if you can’t understand what they’re talking about? As with everyone else, it’s usually best to say ‘I’m sorry.
I didn’t quite understand that. Could you say it again please?’ If, when they repeat it, you still don’t understand what they mean, you could reflect back to them what they’ve said, for example: ‘I think you’re saying that you can hear someone talking to you from the television, even though the television is switched off.’ You don’t have to believe this is really happening; but it’s very important to accept that it’s certainly very real for that patient.
Patients’ comments or ideas that might appear to be very random, meaningless, or completely out of touch with reality, are actually very significant. As with dreams, there is often a strong reason why their minds or sub-conscious come up with particular images or scenarios. However, this is very sensitive territory and unless you have a very strong relationship with the patient, it’s definitely best not to get into Freudian, interpretive mode! We don’t need to understand what a particular image or voice means to the patient, we need to recognise that it does have meaning, respect its importance, and respond in an appropriate way.
Another way of thinking about these experiences – experiences a patient is having which are impossible for us to really understand – is that they are like complex poetry. Each has its own rhythms, meaning and validity and can be understood and responded to on different levels.
The experience of psychosis can be terrifying and distressing, especially if the voices or hallucinations are threatening or abusive. Patients appreciate staff acknowledging just how distressing the experiences are. A great concept is to use validation techniques which respond more to the person’s feelings rather than focusing on the facts or accuracy of what they’re saying. Rather than being diverted into a mutually frustrating ‘debate’ about whether an individual is a member of the royal family, the focus becomes what the patient feels about this identity and role.
Progressive communication impairment is arguably the most complicated, puzzling, frustrating and distressing feature of dementia – for staff and even more so for the individuals themselves. (And their anguished loved ones.)
Mentalising skills are indispensable when talking with people with dementia because the more complex the situation in terms of feelings, thoughts and relationships, the more important it is to mentalise. As well as careful consideration of your own speech and what the patient is trying to say, it’s equally important to be very tuned in to what they seem to be feeling.
Validation techniques described above are again an excellent way of addressing what’s underlying the apparently irrational or inaccurate things a patient is saying. The classic scenario is around time orientation, a particular area of confusion for people with dementia. Wrangles about, for example, which decade we’re currently tend to be futile and demoralising for staff and patients. Unless there are valid reasons for trying to convince the patient of the real date, using validation techniques produce the more fruitful consideration of on what the patient might be feeling about the period of time they are locked into.
An even more fraught ethical and practical, and very common, dilemma for staff is when a patient believes that a loved one who has died is still alive. The pragmatic situation is that it is very unlikely that the patient can be persuaded they are wrong. None of us like the process of someone trying to persuade us we are wrong, and it’s clear that when the disputed facts are about the death of a loved one, emotions are going to run very high. This is a classic situation where it’s best to use validation techniques.
Some of the most prevalent communication difficulties for people with dementia arise from severe memory limitations, especially short-term, such as:
- limited attention span
- impaired ability to be logical
- confusion about fact and fantasy
- confusion and about past and present, including muddling generations
- impossibility of focusing on more than one thought at a time
- losing their train of thought
- repeating thoughts or words over and over
- given all the above, an unsurprising inability to maintain a conversational topic
More specifically, the following are often characteristics of the speech of people with dementia:
- saying very little and finding it particularly hard to initiate a conversation
- using ‘empty phrases’ (a rather loaded term for vague descriptions like “that thing” or “you know”.
- Using generalised descriptions of an object whose name they can’t remember, or an apparently arbitrary substitute word or, impressively, creating a new word for it
Attitude/approach – feelings first!
- Feelings first is a fabulously concise way of keeping in mind what really counts. Does it matter if the patient thinks Margaret Thatcher is still Prime Minister? The crucial issue is how the patient feels, about Thatcher, that era, or about wanting a cup of tea. Feelings trump facts for people with dementia and those caring for them.
- The over-riding priority is to help the patient to feel good about themselves, motivated to express themselves and confident about your desire to support them.
- Play to the patient’s strengths – their memory of the past; words, concepts, and topics that they often use
- Simple acts of physical contact such as holding or the person’s hand or putting your arm around them, can be very reassuring and contribute as much as a complex conversation with someone who isn’t this intellectually impaired.
- Appreciating the individual’s qualities and their history will be reflected in how you care for and regard (in both senses of the word!) the patient, and greatly help avoiding unintentionally being or sounding patronising.
- People with dementia do have some behaviours and needs which overlap with those of children. But of course they’re the very opposite of kids in terms of having decades of experiences, skills, relationships, achievements….
- When a patient is very withdrawn and unresponsive, and when you are having yet another incredibly pressurised shift, it’s easy to fall into the trap of speaking about them as if they weren’t there. Managing to make the extra time and effort to avoid this avoids the patient feeling excluded and/or more bewildered, and both reassures and sets a positive example to others including their loved ones and their other visitors.
- Just like best cocktail party etiquette, it really helps to begin a conversation by identifying yourself by name and perhaps role and by calling the patient by their name.
- Using words that the patient is familiar and confident with, especially those that they use with the words’ conventional meanings.
- If the patient doesn’t have English as a first language, it’s a real bonus to learn and use some words and phrases from this.
- Interrupting someone who has dementia when they’re trying to communicate an idea is likely to result in them losing their train of thought.
- But… talking with people with dementia creates an exception to the usual good practice of not jumping in quite quickly to provide a word the individual is struggling to find. Depending on the person and situation, helping out with a word or phrase can spare considerable frustration and distress, provided that its accuracy is checked with them.
- Open ended questions can be very daunting for people with dementia. For example, it’s easier for them to be given the option of saying yes or no to a choice of two, let’s say food, options
- Making sure you face the person when speaking to them rather than being slightly (or very!) out of their line of sight – which might itself be limited by sight impairment
- People with dementia usually remain highly sensitised to people’s tone of voice so it’s very very important to keep this as warm, calm and respectful as possible. The GP journalist Dr Ann Robinson helpfully describes this as being the way we expect to be talked to by staff at John Lewis.
- Older people tend to lose hearing more in the higher ranges, so it’s important to speak slowly, at a normal level (not too loud), using a low-pitched voice rather than a ‘talking to kids’ higher pitch that it’s easy to fall into using. It’s not just a matter of avoiding sounding (and feeling and being!) patronising, but also of the patient actually being able to hear what you’re saying.
18. People who have English as a secondary language
- An early exercise is to check if the person knows essential phrases like “I don’t understand,” “Slowly, please,” and “Please repeat.” And if they don’t, to try to teach these.
- Humour can be particularly helpful but also risky as there are considerable national differences in what’s considered funny and what’s experienced as offensive. (We’re of course not referring to the running gag in the UK about Germans on holiday getting up at 4AM to nab the best spots on the beach.)
- Similarly, while making eye contact is an important element of ‘traditional’ British communication, in many cultures it is regarded as intrusive or over-familiar. This is a tricky one, because a patient from a minority culture may be avoiding eye-contact because of custom, but it may (also) be an indication of them feeling particularly withdrawn. As ever, the better the knowledge of the individual and their background, and the stronger the relationship with them, the more accurate and helpful the interpretation is likely to be.
Archive film is a fantastic way to preserve past experiences and bring memories to life.
Read more here: http://www.bbc.co.uk/history/handsonhistory/film-archive.shtml
- When I feel disconnected I write the word ‘hello’ on a piece of paper and give it to a staff member. They write back ‘we are just here’ and hand it to me. Sometimes it enables me to talk and sometimes it is just enough to feel re-connected.
- My husband would video me so I could keep in contact with the children during the week. I would sometimes read them a bedtime story. Watching their replies gave me so much joy and they could also see mummy was getting better.
- Peace for me was the afternoons I had just me and my dog. I didn’t talk except to him. For that time it didn’t matter that I was a patient – I was his best friend and he was mine.
- The staff and I had this understanding that it was okay to check and ask if I felt misunderstood. As time went on I needed to do it less and less but it really helped to know it was okay if I needed to.
- I found that talking to others whilst doing an activity was the easiest way to start a conversation.
- I find it difficult to trust people, so my key-person gradually built up spending more and more time with me until I felt comfortable. Sometimes I didn’t want to talk so we just went for a walk together.
- I’m not very good with words but I can express how I feel with my drawing.
- The ward doctor drew me diagrams to help me understand why I was ill, because I was struggling to retain verbal information.
- I didn’t want to disturb the staff so I unburned my mind through writing. Later, I showed my named-nurse my diary and she felt it gave her a lot of insight into how I was feeling. She also told me I can speak with her any time she was on shift. But I carried on with my diary anyway.
- I liked the fact staff understood that support can come in a variety of forms – from pets, to people, to letters, to smiles.
- I kept a little diary which I could show the staff if was struggling to verbalise something. It helped a great deal.
- I have a positive diary in which I write all the good stuff that happens throughout the day – even the things other people take for granted like getting up in the morning.
- I try and keep myself safe but when I am struggling with this I write down what I am finding difficult and scribble over it with red pens, sometimes I give it to the staff but other times I rip the paper up and it seems to help.
- I kept a diary which my key-person would look at with me. If I felt cross or angry with the staff I would write it in there and we would talk about it. It stopped all the frustration building up inside me, and was often easier than talking directly about it.
- I find that the people I connect best to are the ones who listen to what I’m not saying rather than what I am saying.
- when I am feeling paranoid all the staff are against me I wear red socks and when I feel ambivalent I wear my yellow ones and when I want to talk to them I wear my green ones. It means I don’t have to explain when I want space; they can see my socks and understand how I’m feeling towards them.
- There was one patient that was so quiet I avoided him for ages. One day I had a note under my door from him. He was very shy and didn’t like talking to people. Now we send supportive notes to one another everyday and he is a really good friend.
- I felt under pressure to tell the staff everything about me so that they could make it all better but I found writing down the things that mattered the most to me and giving it to them helped a lot.
- Sometimes my mind was so foggy I couldn’t understand even the most simple of instructions. We had to find new, innovative ways of communicating at times like that
- I felt under pressure to tell the staff everything about me so that they could make it all better but I found writing down the things that mattered the most to me and giving it to them helped a lot.
- When I didn’t have the words I used to find the actions. But they were almost always unhealthy. I try to be patient now, and believe that the words will come – I just have to get through till they do. I find crying helps bridge that gap.
A little note from Marion Janner (founder of Star Wards)
And because Matthew can’t read at all, between us we’ve become quite imaginative in explaining things to each other using mime (Matthew’s giraffe is the cutest thing you’ll ever see – other than his elephant), pointing, photos and other pictures or schlepping the other one along to show them what we’re talking about.
Matthew is very creative and I’ve learnt masses from him by the way he spots very different perspectives on and potential in things. He’s not technically autistic – but he does love things that spin! He can see the spinning potential in objects from umbrellas to phones.