Do you need support for a relative with Alzheimers Disease?

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The Alzheimer’s Society website is an excellent source of advice and guidance and we recommend you read this before making any application.

ONRECORD will help you through the process. It can be set up to mirror the Decision Support Tool (DST: See pages 8-10 of the guidance) and can be used to comply with the following recommendations of the Alzheimer’s Society:

  • In advance of an assessment, get a copy of all the documents that relate to the assessment process, including the Framework and the Decision support tool. Use them to do your own assessment of a person’s needs. The documents are available on the website.
  • Good record keeping is essential. Record the date, time, contact person and brief summary of all conversations with staff from your CCG, hospital, GP, care home, social services etc about the needs of the person you care for.
  • File all the information you gather. For example, you might want to get a folder and file information under different headings, such as care home notes, nursing home notes, NHS continuing healthcare assessments, care plans, letters and your comments.

ONRECORD will easily and efficiently help you follow these recommendations and be much more effective than trying to write things down on paper or enter it in a Word document or a spreadsheet. You will be more prepared than the NHS workers doing the assessment:

  1. Download the DST;
  2. Set up each of the 12 domain headings with a separate ‘label’;
  3. Carry out the assessment over whatever period is reasonable;
  4. To decide on the impact/severity rating, try to find out from the professionals beforehand how they decide on ratings and take a lead from that;
  5. Add another label called “communications” and keep a record of ALL the contacts and other communications you have with the assessors as recommended in the second bullet point above. Don’t just record conversations but add emails, letters etc and upload copies, along with any documents too. Then you’ll have an accurate and detailed account of the history of the communications.

Remember things can go wrong and you may need to appeal and or complain. Be prepared and a well presented, thorough chronology always helps decision makers. Your own DST assessment with recordings, ratings and supporting evidence on a timeline and calendar will be useful too when presented in a report format if you’re challenging the professionals’ analysis.

The Alzheimer’s Society provides very useful guidance on complaining and appealing:

Having as much documentary evidence as possible will help you to make a strong case. You might want to look at the care needs portrayal (sometimes called an individual needs portrayal) and work out whether it was used to support the Decision support tool and the overall decision. You should also ask for social services, care home and NHS patient records. If you are asking for a review to look back over a period of time, look for copies of old assessments and reports showing the level of needs at that time. Care plans and notes, including any daily progress records from the person’s care home, may also be useful. Your own notes on the person’s medical history and needs will also be useful.

Summary of the assessment process

Decision Support Tool (DST)

The DST records evidence of an individual’s care needs to decide if they qualify for continuing healthcare funding. It is important to understand the decision-making process to fully appreciate the importance of the DST.

The DST identifies 12 areas of need or ‘domains’ – 11 specific domains and an additional domain for recording needs that don’t immediately fit into the other 11.

Note: The National Framework states that:

In certain cases, an individual may have particular needs that are not easily categorised by the care domains described here. In such circumstances, it is the responsibility of the assessors to determine the extent and type of the need and take that need into account (and record in the 12th care domain) when deciding whether a person has a primary health need.

Each domain is rated in levels of need from: ‘no need’, ‘low’, ‘moderate’, ‘high’, ‘severe’ and ‘priority’. The levels reflect the nature, intensity, complexity and unpredictability of a need.

  1. Behaviour (e.g. aggression or lack of inhibition);
  2. Cognition (e.g. memory, reasoning, orientation in time, place and person);
  3. Psychological and emotional needs (e.g. symptoms such as depresseion, anxiety or hallucinations);
  4. Communication (e.g. speech and hearing) ;
  5. Mobility (e.g. risk of falls, inability to bear their own weight);
  6. Nutrition – food and drink (e.g. difficulty swallowing);
  7. Continence;
  8. Skin condition – including tissue viability (e.g. pressure ulcers);
  9. Breathing (e.g. emphysema or chest infection);
  10. Drug therapies and medication, symptom control;
  11. Altered states of consciousness (e.g. drowsiness, coma)
  12. Other significant care needs.

The continuing healthcare process

  1. The first step for most will involve a healthcare professional using a checklist to decide whether it is appropriate to undertake a full NHS continuing healthcare assessment. Note that this does not decide if an individual is eligible for funding, only whether they should be recommended for a full assessment.
  2. If the checklist identifies the need to carry out a full assessment, the Clinical Commissioning Group (CCG) will be contacted.
  3. The full assessment is carried out by a multi-disciplinary team of two or more health or social care professionals familiar with the applicant’s needs. In some cases, the multi- disciplinary team will contact the specialists already involved with the applicant’s care to build a better picture of needs.
  4. The information from the full assessment will be used by the multi- disciplinary team to complete the ‘Decision Support Tool’ (DST).
  5. The assessors will allocate a rating of need to each care domain to determine if the individual has a ‘primary health need’ and then make a recommendation to the CCG as to whether the individual should be entitled to NHS continuing healthcare.

A clear recommendation of eligibility would be expected if the individual undergoing assessment has:

  • ‘Priority’ level of need in any four domains;
  • Two or more instances of severe needs across all domains.

If the following apply, this may, depending on the combination of needs, also indicate a primary health need:

  • One domain recorded as severe together with needs in a number of other domains; or
  • A number of domains with high and/or moderate needs.