Over 1,200 people work in frontline roles in Sense, supporting deafblind people in our group homes and day centres. The work goes on 24 hours a day, seven days a week to give the people who use our services the quality of life we believe they are entitled to. HILARY TODD investigates

No one would pretend that working people with some of the most complex needs in our society is an easy option. Moreover, in the current booming economy there are plenty of other job opportunities around. So what is the job like and what inspires and motivates this army of staff? What challenges does the work bring and are they responsible for staff shortages in some areas?

It’s just after lunch and Anthony is sitting at the table in the activities room. Paul Walker, his support worker, ties a plastic apron on him and in case Anthony hasn’t yet worked out what is coming next, Paul hands him a wooden spoon to indicate that it’s time to do some baking. But before they can get stuck in to the flour and butter for making shortbread, Anthony signs that he needs the toilet. “Anthony couldn’t do that a year ago when I first came here,” says Paul. “He had no way to communicate any of his needs. Now he has learnt this one sign, which gives him some control and some dignity.” Paul’s warm smile shows just how much this breakthrough means to him too. “It can be quite a tear-jerker watching someone achieve something,” says Paul.

If this seems like a small achievement by most standards, it’s a giant leap forward for deafblind people like Anthony who need skilled support and patience beyond measure to develop the abilities they have. This achievement, at the Anne Wall Day Centre, is echoed right round Sense homes and centres every day and is clearly a key reason that frontline staff love what they do.

“I can help people to develop a means of communication when they didn’t have one, sign language, symbols, objects of reference, sometimes using computers,” says Jayne Cuckson, an education tutor with Sense North. Sarah Oliver, also from Sense North, feels she got most reward from working one-to-one with an individual with challenging behaviour who came to a group home in Leeds from a long-stay hospital. “She had been one of 20 clients with only three staff. She had no means to communicate, had never learnt to use a toilet and could not even get into a car without fear. But after a year she had developed a limited communication method using objects of reference; for example shoes mean ‘going out’ so we were thrilled when she started bringing the shoes to indicate she wanted to go out. Now she is able to go out in the car for a burger and a drink. It’s a big achievement for her.”

Yvonne Evans runs a pre-school nursery for children with multi-sensory impairments in Northern Ireland. The nursery assesses the children, some as young as 18 months, and provides specialist services to meet their individual needs, such as physiotherapy and speech therapy. “You get such a lot back when you see any development in the children,” says Yvonne. “You might work on their signing (Makaton is used with most of the children) for weeks or even months before you see them realise for the first time that they can sign their needs. For instance they can show they want more of something - maybe they want more of the rocking horse or the trampoline. I can’t wait to tell the parents.”

That steady development of understanding and the ability to communicate it are perhaps the greatest rewards frontline staff get. Every one of the staff interviewed for this feature mentioned the glow they get from watching a deafblind child or adult make a little breakthrough. Achieving the breakthroughs is typically slow and by no means easy but many staff relish working with deafblind people because it is a challenge. Sandra Morgan, a newly-recruited support worker at the Anne Wall Centre is clear about the challenges: “You can give your best and sometimes it just doesn’t work, the individual doesn’t respond so you have to start again. But we learn something new about the people who use our services every day. The joy is knowing you’ve made someone happy.”

Many staff remark that their work helps deafblind people to lead ordinary lives. As Graham Cupper from Johnson Avenue in Spalding says, “It’s great getting people into the community to do normal things. I have been supporting Tony to go out for lunch in local cafés and we have taught him to stay on the pavement and to use pelican crossings so he is much more independent when we are out.” Marti McIntyre in Northern Ireland agrees: “This should be like ordinary home life. I take one lady shopping; she hadn’t been shopping for years.”

Relationships are key to job satisfaction too. “You build a relationship with the people you work with,” says Yvette Willoughby from Warren Farm Road in Birmingham. “The deafblind people trust me and love me to come on duty.” Many staff grow to be very fond of the people they support and the feeling is often reciprocated: “Sometimes they just want to give you a big hug,” says Marti. And many staff relish their work as part of a team. “I found the staff were very friendly and made me feel I could cope, even though I had not worked with deafblind people before,” says Sandra Morgan. “The staff are very supportive; you can bring anything up in supervision.”

Supporting families is also part of the equation. “When I have had a hard day, I know I can walk away from it, families can’t,” says Sarah Oliver. “It’s nice to be able to offer help and support to families,” says Yvonne Evans. “At the very least this is respite for them but parents often say that they see we have made a difference. They say the children get a lot out of being here, it helps their social development and their transition to school.”

It is also evident that staff value the training they routinely receive in Sense, from the induction training when they first start to continuing development and opportunities to obtain NVQs or other qualifications, which Sense pays for. “The nature of deafblindness is so specialised that we have to invest in training and development,” says Alison Bennett, Head of Staff Development. Frontline staff are her priority. “We can’t assume that new staff know anything so training is needs-driven. And we do try to be a leader in training, we want to stay at the forefront because it’s important to be seen as the experts. We know that we exceed the national Care Standards which state that staff should have 'at least five paid training and development days (pro rata) per year’.”

Training opens up a career ladder for those who want to go further. Sandra Morgan appreciates this: “I like what Sense stands for, it provides a very special service and they give you opportunities, they push you.” The training not only supports staff in the work they do, it gives them portable skills and qualifications for jobs with other employers. “Sense is a great organisation,” says Graham Nolan, manager of the Anne Wall Centre. “It lets you invest in the staff. Staff have great opportunities here; they can become skilled practitioners or BSL translators or go into management.” More mature staff appreciate the fact that “age is no barrier here”.

There is, however, widespread agreement that working with people with complex needs can be stressful at times. “You can get times people are anxious or demanding,” says Graham Cupper. “They seek reassurance and sometimes want attention non-stop. You try to involve other staff to give yourself a break, or I go out for a ‘cigarette break’ (he doesn’t smoke!), just to get away for a minute. It can be draining.” Sarah Oliver agrees it can be very demanding, especially when an individual’s behaviour is challenging: “It can be a battle to ignore the challenging behaviour and see the person beyond that, especially if you are often being hit or scratched. It can be stressful, draining emotionally and physically, and very intense.” Even with calmer indviduals, staff sometimes feel that “it’s two steps forward and one back”, when the headway made yesterday evaporates. What makes it bearable is that there are always people to turn to. “We manage by helping as a team when we are short of staff,” says Jayne Cuckson. “You have other staff around and they are very supportive,” says Yvette Willoughby who sometimes has to deal people who harm themselves.

Most staff find ways of switching off when they go home, though others know they ‘take the job home’ sometimes. As Sarah Oliver says, “I’m on call for 24 hours from Monday to Friday so I can’t go too far away and because the mobile can ring at any time, mentally I’m still tied to the job.” This is a particular challenge for Sarah now that she has a young son. Family life can be tricky for shift workers too, though most of those interviewed for this feature either had grown up families or were yet to start a family. Most can organise home life round their working hours, including the sleep-ins or waking night shifts that go with the job for many.

The job inevitably becomes harder when there is a staff shortage for whatever reason. Yvette sometimes feels she has to fit her life round Sense “because there is a lot of overtime” to cover for staff shortages, while managers like Pat Morris from Spalding have to roll up their sleeves and work on rota more frequently when staff are off sick.

Indeed managers can face a tough challenge of keeping the service going when staff are ill or when they just can’t recruit enough support workers to fill the vacancies. “Recruitment can be difficult in Spalding,” says Pat Morris. “There is 100 per cent employment here so we have been advertising one post for months without success. People don’t want to work the unsocial hours. ” Also as many as 20 per cent of new recruits leave in their first year, though this is average for the sector, because they don’t enjoy the job, or feel there are easier ways to make a living. Many managers rely on agency staff to fill the gaps and ensure that there is 24 hour cover at all times - though agency staff often take up permanent posts so this can be a useful means to recruit. Other managers have no shortage of willing recruits, however, and instead would welcome more people using the service. Yvonne Evans feels “It’s frustrating knowing that there are families who can’t use our service - perhaps social services won’t fund the placement, or the families live too far away or the child is too ill to attend.”

Staff are well aware that they could make more money doing other jobs or even doing similar work in local authorities where pay and conditions are generally better. The cost of housing is a worry, “It’s getting harder to buy a house round here on our wages,” says Sarah Oliver, while Graham Nolan reckons most of his team commute from cheaper housing areas to work at the Anne Wall Centre. Many staff feel there should be shift allowances for unsocial hours. As Pauline Salter from Andlaw House in Exeter says “At night I am responsible for five residents and the building but I don’t get enhanced pay.” Though not everyone in Sense is likely to feel as positive about their jobs as the staff interviewed here, all agreed that “you do this work because you want to do it”. They value job satisfaction way beyond financial rewards.

Staff also recognise that the whole care sector is not well paid and that charities face unique difficulties in giving them a better deal. Sadly, there is little status in being in social care. “People think it’s a menial job,” says Pat Morris. “In fact staff need to be highly trained to do this work. We provide an important service and we are important to the service. Care work needs to be seen as a career more like other public sector jobs, like the police or teaching or health workers. We need to raise awareness of what we actually do.”

Pat is one among many in Sense who don’t want to work anywhere else. “I used to work in an insurance office where I sat and watched the clock all day. Here I never get bored. I love what I do.” Just how many people out there in offices, supermarkets or factories are looking at the clock right now and just wishing for a chance to do something really fulfilling? We don’t know, but we do know that, as Ges Roulstone put it, “We are very fortunate in our frontline staff, they are totally devoted.”

What do frontline staff actually do?

Support workers/ social tutors and other staff who work directly with deafblind people in Sense’s group homes and day centres carry out a range of work. They help people to get up/go to bed, wash or bath, dress and tidy their rooms. They encourage a deafblind person to choose their own meals and support them to prepare the meal. They may accompany the person to their day activities and help to support them through the day, trying out and helping to teach activities such as crafts, swimming, cooking, going out for meals, rides or walks or whatever the person most enjoys. At night waking staff are often needed to give reassurance and support, and ensure everyone has a comfortable night.

The support often includes personal care but support staff are trained to encourage people’s independence, communication skills (which may be non-existent when someone arrives), interaction with other residents, social skills and the exercise of choice.

Support staff also safeguard individual’s health and safety, which is critical when few deafblind people can explain fully how they feel. They are trained to cope with incidents such as minor epileptic seizures and when a deafblind person is ill they accompany them to the doctor or hospital to act as interpreter and friend. Support staff may also liaise with and help to support families.

What are Sense staff worth?

“Sense values its staff and wants to be a good employer” is the message from all the senior managers yet there is immense frustration that they can’t pay frontline staff what they are truly worth. “Sense has taken the lead in offering good employment conditions,” says Pete McCollin, Head of Human Resources. “We offer generous paid sick leave, maternity leave, and flexible work patterns such as swapping shifts and are willing to contribute to a stakeholder pension scheme.” But as he and Malcolm Matthews, Director of Community Support and Information, say, “In other industries that level of responsibility would be much better rewarded and regarded.”

Salaries cannot be increased without a better deal from the local authorities who pay residents’ fees. Sense has to negotiate fees from over 180 separate local authorities, a task that falls to Ges Roulstone, Director of Children and Adult Services, and his team. “When we make an offer of a place we calculate a fee. This is usually the highest fee for residential services that a local authority sees because our client group has the most complex needs of all; cheaper options have often been tried and failed. Even though they recognise they need us (because there is nowhere else for our clients to go) local authorities still want the service as cheaply as possible. One Chief Commissioning Manager told me that he wants to pay ‘the fee he can get away with’, that’s the scandal.”

Fees are then negotiated annually to give staff a cost of living increase. “Local authorities may pay up, offer nothing or ignore our letters. I need to employ a staff member whose sole job is to shout down the phone to local authorities. But that’s the easy bit. The hard bit is having to renegotiate the fee because the individual’s needs have changed. It’s not unusual for the health of the deafblind people in our services to deteriorate, meaning additional support is needed. Local authorities resent having to pay for this. They are very good at prevaricating; it’s a wearisome process,” he says with feeling.

The result is a huge gap between Sense’s income from fees and what the service actually costs. Sense has to make up the shortfall from its voluntary income, despite the fact that the Charity Commission regards it as unacceptable that most charities should have to do this. “We have always been denied the real costs of care” says Ges. Yet Ges is optimistic about the future. “The tide is turning. Attitudes are beginning to change in local authorities and the Government.”

Marti McIntyre has been a full-time support worker at Eden, a house in Carrick Fergus in Northern Ireland, for almost two years.

“Before that I worked in a factory for 16 years and when I was made redundant I wanted to do something very different.

“For the first three weeks I wondered if this job was for me. I didn’t think I could cope. I was even frightened of one deafblind person - I didn’t think I could work with her. Now I wonder what I worried about. I love it - it’s very rewarding. You make a big difference to their lives. We are teaching one lady to sign and after six months she has learnt maybe six or seven signs, it’s slow but they can learn and change.

 “The work can be stressful. We have one person who can have challenging behaviour for up to six hours, then we need two staff to support her, fifteen minutes at a time. If you are on your own it’s a nightmare. Fortunately it doesn’t happen very often. If you have a day like that it can be hard to switch off when you go home. But I wouldn’t go back to the factory.”

Paul Walker is a support worker at the Anne Wall Centre in Barnet where he has worked for just over a year.

He has always worked in social care, latterly in a management post with adolescents in residential care, and despite being frequently headhunted to go back into it, has no plans to leave Sense.

“I have enjoyed learning new skills to work with deafblind people. You get a lot out of it. My objective is to make life more enjoyable for the people who use our services; they deserve a chance in life they can relate to. You always go home thinking you have made some sort of impact, like watching someone develop their swimming or small things that give people self respect and self worth.

“There’s a lot of good work done here, for example with people with challenging behaviour. It’s good to be working in a charity; Sense offers us a much more flexible working environment than a local authority.

“But people don’t recognise what we do. You have to be multi- skilled to do this work, knowing how to encourage communication skills for instance or how to handle epileptic fits. I had more status as a residential social worker. We would get more people in the care sector if the pay were higher and the status better.”

Pauline Salter works nights as a support worker at Andlaw House in Exeter.

She has always worked in the care sector, mostly with elderly people, and has now clocked up six years in Sense.

“I work 10pm to 8am, four nights on and four off, to look after the five people here. One person usually stays up late watching TV so I have to settle him, and few of them sleep through the night. Three can get epileptic seizures in the night so they have a monitor in their rooms that I have to listen for, though you just sense when they are in distress. I have to turn one individual frequently to prevent bedsores.

“I like working nights because it is more relaxed; you can really spend time with one individual who perhaps needs reassurance. Occasionally it’s difficult. One night three people needed to be given medication for epilepsy and sometimes you get challenging behaviour. But I get on so well with the people who live here. I go home knowing I have helped them all to have a comfortable night. I’m very contented here.”

Sarah Oliver has been an Education Co-ordinator in Sense North for a year but has worked for Sense for six years.

She started as a social tutor in Leeds then took on the job of Acting Unit Manager before moving to her current post.

“My job involves planning and providing activities the people who use our service, for example college courses, sports and activities in the community, and supporting staff to deliver activities. I work 50/50 with staff/service users. You might try different activities for weeks before you finally hit on something that brings a smile to someone’s face. The deafblind people I work with have little communication and you get such a lift from seeing them communicate in some way.”

“I started out in Sense with a degree in education but no experience so I have mainly learnt on the job. There is lots of training on the job and Sense has paid for my evening class in signing and for my NVQ level 4 course. You get opportunities to progress and develop a career in Sense. I don’t want to leave.”

Pat Morris is Care Home Manager at Johnson Avenue in Spalding, a group home for four people.

She started her career in Sense as a part-time social tutor in 1991, gradually increased her hours then applied for a deputy manager post. She has been a home manager since early 1998.

“My job involves staff management and supervision (eight staff plus casuals), implementing care plans, administration, attending person-centred planning (PCP) meetings, running staff meetings, and working on rota with the residents. I really do enjoy it. I never get bored and you’re always learning something new. I’m still finishing my NVQ level 4 that has really helped to develop me. You can’t fault the training opportunities and support.

“Getting through the admin can be a challenge, there’s never enough time for this and you sometimes feel you aren’t putting as much into it as you should. When we are short staffed I can spend hours on the phone trying to get cover but luckily four or five casual staff usually fill the gaps. But when you do get a difficult or stressful day, it often brings the team closer together.”

“The pleasure comes from seeing the small achievements that deafblind people make, working with people, supporting and helping them. You do get to be very fond of the people you work with, deafblind people and staff.”

Yvette Willoughby is a support worker at Warren Farm Road in Birmingham.

She has been with Sense for three years after training and working in the care sector for 10 years. After working with elderly people, patients with mental illness and other groups, she thought she would enjoy the challenge of working with deafblind people.

“The job satisfaction all comes down to the carer. You have to have the right attitude. You have to be able to work on the same level as the deafblind person level and be able to ‘listen’. I can use all my skills to develop relationships, encourage people to be more independent and give them a better quality of life.

“Simple things give you enjoyment. The people that you support can sense when you have done your best. Seeing their response is the best, the communication you get back, you can see when you have helped someone to feel better. You can get stressed but you have other staff round you and they are very supportive.

“Sense offers you scope to push yourself and lots of options. That’s why I’m still here.”